Global Action on Aging

The Cost of HIV

2012-01-13T11:26:00.002-05:00

Since the arrival of HIV medication, death rates related to HIV and AIDS have changed remarkably. The medications have proven effective. People with the virus can stay healthy and live longer than ever before. Thanks to medications, a growing number of people can age despite the virus. Only in the US are more than one million people living with HIV. Around 37 percent of those persons are 50 years old or older. According Yale Medical School experts, this number is expected to grow to 50 percent by 2017.

Unfortunately, research has not focused much on HIV/AIDS and aging. What is the impact on the older individuals, who also might be suffering from normal comorbidities of aging. Combining aging and HIV probably means that persons need more drugs than the average older person. Consequently you end up with a higher medical bill.

Older persons in the US are already on a limited budget. According to the US Census Bureau in 2010, 16 percent, or 49.1 million old people live in poverty. Out of those, 15.9 percent are 65 years or older. Medical spending for those who are 64 years old is almost twice as high as for a person aged 35. This age group usually requires more health care and more expensive medical treatment. High medical bills are basically pushing older Americans into poverty.

What is the cost for an individual living in the US to be treated for their HIV?

HIV drugs cost a lot. The lifetime cost of care for a person can easily reach up to hundreds of thousands of dollars. The average cost of HIV treatment is $ 14.000 – $ 20.000 a year, according Michael Kolbe, MD, (Professor of medicine and Director of Comprehensive AIDS Program and Adult HIV Services). If you pay only $1,000 per month you are doing well.

What kind of treatment does HIV positive people receive?

An HIV positive patient’s drug costs depend on how far the virus has gone. After being diagnosed patients, usually are treated with antiretroviral therapy (ART). It uses different kinds of medications to keep HIV from growing and multiplying in the body. ART lowers the amount of HIV in the body, so that the immune system can stay strong and healthy. Some ART drugs keep the virus from reproducing and some block HIV from entering the body’s cells. ART does not cure HIV; it keeps HIV from damaging the immune system. However, if a patient misses doses or stops taking the HIV drug, he or she runs the risk of developing drug – resistant HIV. This means AIDS patient must add more drugs to their doses.

Staying healthy is expensive, is there any kind of economic help available?

Without insurance very few people in the United States could afford HIV drugs. Luckily there are programs that can help people without insurance. Those 65 or older can get economic help from Medicare. To understand Medicare better I spoke to Norma Harris (Health Insurance Specialist at Medicare in NYC). She explained how Medicare can help people.

“Medicare is the federal health insurance program for people age 65 and older and younger adults with permanent disabilities. Most people age 65 and older are entitled to Medicare if they are eligible for Social Security payments, which are based on credits earned through working.”

Today Medicare is an important source of health coverage for people with HIV. It covers approximately one fifth of people living with HIV in the US. (Besides people over 65, there is also a large group of young adults that qualify because they are disabled and receives Social Security Disability Insurance). One of the biggest challenges for Medicare beneficiaries living with HIV/AIDS is the lack of a prescription drug benefit. Without drug coverage, most people living with HIV/AIDS on Medicare experience very high out-of-pocket costs to pay for life-prolonging antiretroviral medications or they are simply unable to afford and access these drugs. Many people living with HIV/AIDS on Medicare rely on public or private supplemental insurance to help pay for prescription drugs. With the current economic crisis, many states are cutting back on drug programs for HIV patients.

New challenges to come

As more people with HIV/AIDS live longer, they will be more likely to qualify for Medicare. Since the 50 + group also is the fastest growing population group, the pressure on the program will be enormous. Medicare’s spending on HIV has increased with 70 percent since 1995. This number is expected to grow. People are already struggling with the high costs of their medicine. The drugs are effective and they are available. But the US is still dealing with a high number of HIV/AIDS patients who do not take their ART medication. We need more government funds or the cost of the HIV care must be reduced. To reduce the costs, we must turn to the pharmaceutical companies to lower the costs. Of course, the least expensive option would be a successful prevention program to stop the estimated 40.000 new HIV infections that occur in the US each year.*

Sanna Klemetti s.klemetti@globalaging.org

To learn more please read further:

Medicare and HIV:

http://www.kff.org/hivaids/upload/7171_04.pdf

*http://www.gmhc.org/learn/current-hiv-statistics

HIV Does Not Discriminate

2011-12-02T11:07:00.000-05:00

Let's face it, sex never gets old. Turning 50 does not mean sex life automatically stops. For a long time stigma around age and sex has shaped how many people feel; discussions about aging and sex have been behind closed doors. This stigma contributes to how persons in the US and Europe see the increase of newly HIV infected older adults and seniors. Studies show that many people over age 50 do not use condoms. They seem to ignore or be unconcerned about HIV and AIDS. At the moment, the 50 years and older population is the fastest growing population in Europe and the US. In the year 2000, approximately 605 million people were 60 years or older. By 2050 that number is expected to be close to 2 billion. This is very large group of people. Why should this group be ignorant and excluded from the fight against HIV/AIDS.

What can we do to make older adults realize they are at risk? How do we get older adults to get tested for HIV? How can we change the general view on aging and sex?

To solve this problem we need to attack the problem from different angles. I believe popular culture is encouraging a slow change in the image of older adults and seniors. More TV shows and films portray mature women and men living a happy life including sex. Pop culture has started to show more dimensions of people over 50. This development will help change the view younger people have about aging and sex. It may also serve as a form of identification for older adults, helping them to be more open and comfortable about sex and their sexuality.

However, health care systems must take more responsibility when it comes to older adults and their sex lives. This is a good place to start dealing with the taboo around sex and age. Older adults and seniors may not feel comfortable talking about their sex lives with their doctors, a holdover from their earlier experiences when talking about sex was something one did not didn't do. Sexual activity was a very private matter rather than the sex education that is taught in schools today.

Today, doctors should ask their patients about their sexual life and if they are protecting themselves against infection. Since signs of HIV/AIDS can be the same aches of normal co-morbidities of aging, it is important that doctors talk to all their patients about risky sexual behaviors and encourage them to get tested for HIV.

Another important part in making older adults and seniors aware of the risk of HIV and other sexually transmitted diseases is to create HIV/AIDS campaigns that specifically target older people. Most campaigns target young people. By not including the older population in these campaigns, organizers are reinforcing existing stereotypes around aging and sex. These campaigns can serve several purposes, not only prevention and awareness, but also encouraging people to know their HIV status by getting tested.

These are not impossible goals. It is about time we stop thinking that HIV/AIDS is a “young person’s disease.” HIV does not discriminate. No one who has sex is safe, no matter what gender you have or what year you were born.

Sanna Klemetti s.klemetti@globalaging.org

Awarded Exemplary Manager Fired Due to HIV Status

2011-11-04T10:23:00.012-04:00

A couple of weeks ago I wrote about how HIV/AIDS related stigma still exists in the USA. This week I will introduce you to a man who was fired due to his HIV status.

Antonio Munoz is a 47 year old man currently living in New York City. He was diagnosed with HIV during the winter in 2008. When Antonio learned this news, everything stopped for him. He wondered how this could have happened. In his earlier life living in Montreal, Canada, Antonio, he had engaged in alcohol and substance abuse. After moving back to New York City, after eight years as “sober and clean,” and with a new job and health insurance, he went for his first medical physical exam. That's when he found out about his status. He felt that the consequences of his past had caught up with him. It took time to understand the effects of all the medicine he had to start taking. Sharing his status with his close friends was hard, and he was worried about how everyone would react. Antonio was especially worried about how his new job colleagues would take the news. Would he be shunned and treated as an outsider? Would he be the “leper” who deserved what he got, because he is gay? He was surprised to see how well his family and friends took it. However, the news did not go as well with his employer. After sharing his HIV status, he was fired shortly thereafter. Antonio could not believe that after 30 years since the HIV epidemic began, he had to still face stigma and discrimination associated with HIV.

The Case

Tony was working as an Assistant Front Officer Manager for the Manhattan Club Timeshare Association (a hotel) from October 2007 to February 2011. During these four years Tony received an “Exemplary Manager Award” and got two raises after that, one of which was a reward for excellent performance. He was also given a satisfactory written review in 2008. No incidents occurred during 2009. At the end of 2009, Antonio’s doctor told him that his HIV medications were not performing as expected; to improve his health he had to start taking “Sustiva.” This medication must be taken at night since it causes drowsiness; patients much rest after taking it. During this time Antonio was working very long hours during the night shift. His doctor suggested that he change his shift to improve his health. Up to this point Antonio had not revealed his HIV status to his employer; he had made it clear that he had a serious, chronic health condition. The employer never asked him to tell them about the exact nature of his disability. Rather, the employer told him not to tell them what his condition it was when Antonio offered to share the information. After the diagnostic news from his doctor he decided to speak to his employer. He made a verbal request to change his shift and explained to his manager that his chronic condition required him to medicate himself at night requiring which bed rest in order for the medication to take effect. The reply he got was, “The only people entitled to a quality of life are me,” and she also mentioned two other names, who were all managers above Antonio’s rank. Later she also told him that he and all the other managers at his level were to be at the timeshare 24 hours and 7 days a week as required. She also said that she needed him there because he knew the job and she could sleep better knowing that he was there.

Antonio moved on by requesting that his doctor to write a note explaining the importance of how his chronic medical condition required a strict dosing schedule. He also said that if this regime were not followed it could cause substantial health risks. Antonio’s employer did not respond to this explanation. Antonio took the matter to Human Resources office with no luck. These officials told him that the person in charge of the department had authority to do “whatever” he or she decided. However, the Human Resources staff person promised to talk to the head of his department.

On February 1, 2010, Antonio was in a meeting with the people involved and they asked him for how long he had to be on this proposed scheduled change. He explained that he had to medicate himself for the rest of his life. Both of them stated that Antonio knew what the job required from him; if he could not do the job, he could quit. Antonio was denied the change of schedule, even though there were two other employees who said they were willing to take his shift. At this point Antonio asked for the denial in writing but this request was ignored. He requested a week off to think about what he should do and to seek his doctor’s advice. The MD told him that this specific medicine was the best way to ensure that his health improved.

After a week off, Antonio went back to work and was surprised to see that he was put on the day shift. He felt glad that the issue had solved itself. Everything went on as normal for two months. However, the following April 15th the same year he was put back on the night shift. Antonio invoked FMLA and requested intermittent leave; he also filed a complaint of disability discrimination as a result of not being accommodated. After the complaint he was told he could go back to the day shift but at this moment, his employer began retaliating against him. Before the request for an accommodation, the manager praised Antonio; shortly thereafter she wrote up his 2009 evaluation which was misdated to 2008. The evaluation was negative and full of falsehoods. After this, his manager never discussed anything of substance with Antonio. She did not respond to emails. After a while, the employer put Antonio back on the night shift whenever a night worker was sick.

Later he returned to a daytime shift. On February 11, 2011, Antonio was fired. He was told he lost his job because of a customer complaint dating from December 2010. Antonio had never heard about this complaint until the day he lost his job. Antonio believes there never was any complaint; if there were a complaint, the hotel had never mentioned (???) it. Customer complaints were a constant at his job but had never been a cause for termination without explanation. Still today Antonio knows nothing about this customer complaint. He thinks it is pretty clear why he got fired so he decided to pursue his legal options against his former employer. He invoked his rights under the ADA (Employment Rights as an Individual With a Disability) and FMLA (Family and Medical Leave Act).

I asked Antonio what effect losing his job had on him. He told me he felt he had lost his self- worth. Dealing with the HIV illness and the self-imposed stigma was too much to handle at the time. After losing his job Antonio started suffering from depression. He went on unemployment benefits in the absence of a job. When he started to feel better he decided to be pro-active, be his own advocate. Today Antonio is enrolled at Fordham University getting his CASAC (credentialed alcohol and substance abuse counselor) training. He is looking forward to working again.

We at Global Action on Aging wish Antonio much good luck as he moves forward. And we will try to give you updates to let you know how things are going for him!

Sanna Klemetti

HIV/AIDS and Stigma

2011-10-14T11:32:00.001-04:00

What is Stigma?

If you look up the word in the dictionary it says:

1. “A mark of disgrace associated with a particular circumstance, quality, or person,” or “a mark of disgrace or infamy;” a stain or reproach, as someone’s reputation.”

You could say it is a social disapproval of a person on the grounds of their unique characteristics distinguishing them from others in society. Almost all stigma is based on a person differing from the current social or cultural norms. Stigma often creates obstacles for those targeted persons.

HIV-related stigma exists in every country in the world, although it shows up differently across countries, communities, religious groups and individuals. Up to this day there are a lot of misconceptions about HIV/AIDS. Many people are prejudiced or have fear of a number of socially sensitive issues including sexuality, aging, disease and death and drug use. This type of stigma can lead to discrimination and other types of human rights abuses. HIV/AIDS stigma often occurs alongside other forms of stigma and discrimination, such as racism, poverty, homophobia, and age. It is important to understand that HIV related stigma is not static. It has changed over time, just as the knowledge of the disease and the availability of treatment.

Stigma can lead to discrimination and other violations of human rights. This affects the well being and health of people living with the virus. Throughout the world we find well-documented cases of people living with HIV who are denied the right to health care, work, education and freedom of movement. Not only does stigma harm people living with the disease, it also discourages HIV testing as well as prevention methods such as condom-use, and it may create confusion about how HIV is and is not transmitted.

Stigma may look different depending on where you live. In the US stigma often occurs in the workplace and in the health care system. It is not unusual for people with HIV to be refused the care they needed, being blamed for their health status, and also having health care professionals refuse to touch them. In the workplace, people living with HIV may suffer stigma from their co-workers and employers, such as ridicule and isolation, or experience discriminatory practices, such as termination or refusal of employment. Often persons living with HIV fear their employer's reaction should they reveal their status. Next week I tell you about a man who was fired from his job due to his HIV status. This example will clearly show how stigma and discrimination still takes place in New York City in 2011.

Legal Framework

Problems abound in tracking down AIDS related stigma and discrimination. The June 2001 Declaration of Commitment adopted by the United Nations General Assembly Special Session on HIV/AIDS addresses this task. It states that confronting stigma and discrimination is crucial for effective prevention and care. And it reaffirms that discrimination related to a person’s HIV status is a violation of one’s human rights.

Convention on the Rights of Persons with Disabilities

The relationship between HIV and disability has not received much attention. People with HIV may develop impairments as the disease progresses, and may be considered to have a disability when social, economical and political, or other barriers hinder their full and effective participation in society on an equal basis with others. The convention does not explicitly refer to HIV or AIDS in the definition of disability. But states are required to recognize that where persons living with HIV have impairments which, in interaction with the environment results in stigma and discrimination, they can fall under the protection of the convention. *

The New York City Human Rights Law

Discrimination is illegal in New Your City. The New York City Human Rights Law is one of the most comprehensive civil rights laws in the nation. The Law prohibits discrimination in employment, housing and public accommodations based on race, color, creed, age, national origin, alienage or citizenship status, gender (including gender identity and sexual harassment), sexual orientation, disability, marital status, and partnership status. In addition, the Law affords protection against discrimination in employment based on arrest or conviction record and status as a victim of domestic violence, stalking and sex offenses. In housing, the Law affords additional protections based on lawful occupation, family status, and any lawful source of income. The City Human Rights Law also prohibits retaliation and bias-related harassment, (including cyberbullying).

Stigmatizing and discriminatory actions violate the fundamental human right to freedom from discrimination. In addition to being a violation of human rights in itself, discrimination directed at people living with HIV or those believed to be HIV-infected, leads to the violation of other human rights, such as the rights to health, dignity, privacy, equality before the law, and freedom from inhuman, degrading treatment or punishment.

Please visit again next week for the article about Antonio Munoz who lost his job because of his HIV status.

If you want to learn more about HIV and stigma. Please click here:

http://data.unaids.org/publications/irc-pub06/jc999-humrightsviol_en.pdf

* Read the full convention here:

http://www.un.org/disabilities/convention/conventionfull.shtml

Sanna Klemetti – s_klemetti@globalaging.org

HIV/AIDS Prevention Campaigns for Seniors and Older Adults on the Streets of NYC

2011-09-09T11:04:00.005-04:00

The last couple of weeks I have been looking around New York City for any HIV and AIDS prevention campaigns. I wanted to see who these campaigns are targeting, and if there were any campaigns specifically directed towards older adults and seniors. After a few weeks of intense observing, I found one campaign that is directly focused on older adults. Overall I was a bit surprised over how few HIV/AIDS prevention campaigns are out there.

Age is not a condom

Upper west side, NYC

The text under says:

“And if you can’t use one. Tell your doctor”.

3 posters (by Andy Chen Design).

The text under says: “And still using protection. Each & every time”.

“And neither does keeping yourself protected”.

Why have older persons been bypassed when it comes to HIV/AIDS prevention?

People give many answers to this question. Most think of HIV and AIDS as a young person's disease. Older adults and seniors have often been ignored when it comes to HIV / AIDS prevention. As we approach the fourth decade of the HIV epidemic, it is important to remember that about 17 percent of the newly diagnosed HIV/AIDS cases in the USA are found in people over the age 50, (according to the CDC report in 2009). About one-third of all people living with HIV/AIDS in the USA are 50 years of age or older. This number is expected to grow to one-half by 2015. The 50 years and older population is the fastest growing population in USA. Older adults and seniors need to know why it is important to protect yourself as you are growing older. The immune system naturally becomes less effective as you age, which can increase the risk of sexually transmitted infections. Also, after menopause, women's vaginal tissues thin and natural lubrication decreases. This can increase the risk of micro-tears and of sexual transmission of certain diseases such as HIV/AIDS.

Why so many newly infected older adults and seniors?

There are numerous potential answers to this question. One reason could be that a lot of older adults and seniors feel that it is a taboo to talk about sex. During the time they were growing up sex was not talked about in the same was as it is today. Also, some older persons may not be that knowledgeable about HIV /AIDS and therefore less likely to protect themselves. They may not even perceive themselves as at risk for HIV, so they do not use condoms nor do they get tested for HIV. Another reason can be that the health care professionals may underestimate their older patients’ risk for HIV/AIDS and therefore do not tell them about prevention or offer HIV tests. Symptoms of HIV/AIDS can be misunderstood as symptoms of normal aging, such as fatigue, weight loss and mental confusion.

I don’t think there is one single reason for all the newly HIV infected older adults and seniors. All the above mentioned reasons have created this problem. The good news is that none of it this is unfixable. This is what we need to do: Get more HIV/AIDS prevention campaigns for older adults and seniors. Make HIV testing and prevention conversations an obligation between Health care professionals and their older patients. Start offering Sex Education classes at senior centers, making it less of a taboo.

Let me be clear. I think we should stop thinking people stop having sex after the age of 50, because this is clearly not the case.

Sanna Klemetti. S.klemetti@globalaging.org

J Edward Shaw Part II

2011-09-02T09:28:00.005-04:00

Last week I introduced you to Ed Shaw. This week I am describing his activism and volunteer work. At the moment Ed serves as the second chairperson of The New York Association on HIV over Fifty (NYAHOF). Before the organization was established, it went under a different name, the “Aging Task Force on AIDS”. This name was later changed,. Why? Because during the 1980s no one thought people would live beyond the age of fifty. At first the “Aging Task Force on AIDS” was a Think Tank, where people would meet and talk about HIV/AIDS and the aging process. NYAHOF was formed in 1991; today it's members address issues related to HIV/AIDS and older adults. It's members want to ensure that the concerns of persons over the age of fifty and their support networks are addressed,. They want to generate educational, programmatic, and policy initiatives in the field of aging.

I asked Ed how all this could is done. He gave me a few examples of the projects he is working on just now. Ed has spoken at senior centers, churches, hospitals, and high schools. He described one particular project, where he talk to high school students who during the summer months work within areas of health care. Before they graduate , Ed comes to talk to about HIV and AIDS and its impact on the communities. He told me the students really appreciated this moment and the response was infatuating. This is a great example of an inter-generational program.

NYAHOF does more than educate. They assist HIV positive older adults and seniors to find basic things like housing. Housing is very important, not only for the individual, but for the whole community. If you don’t have the basic things it is hard to stay healthy and take your medicine. Ed has assisted lots of people in all five boroughs to deal with legal advice and for them to become more aware of the things they need to do in order to live healthy with HIV.

I wanted to know what Ed’s plans are for NYAHOF’s future. At the moment he is in the process of putting together a mailing list of local legislatures. Ed says it is important to know who is representing you. He encourages everyone to find out for themselves. He thinks all of us should let elected officials know that now is not the time to cut back on health budgets; we need to show them how very important programs are. If we ever want to beat-back rates of HIV and AIDS we must continue to acknowledge the importance of this cause. While Ed is supposed to be retired, he intend to keep on educating and encouraging safe sex practices across all generation, for as long as he can.

Besides NYAHOF, Ed is also involved in a number of other HIV/AIDS awareness projects. He is also on the Board of Directors of New York City Legal Action Center and has served as Community Co-Chair of the New York State HIV Prevention Planning Group and the NEW York City HIV Planning Council. He was also appointed to the first New York City Commission on HIV/AIDS.

Last, Ed and I spoke about the importance of volunteer work. He ended the interview with a quote that I really like by Martin Niemöller, the well-known German anti-Nazi theologian and Lutheran Pastor:

“First they came for the communists,

and I didn't speak out because I wasn't a communist.

Then they came for the trade unionists,

and I didn't speak out because I wasn't a trade unionist.

Then they came for the Jews,

and I didn't speak out because I wasn't a Jew.

Then they came for me

and there was no one left to speak out for me”.

Sanna Klemetti: S.Klemetti@globalaging.org

If you wanna write Ed, you can do that on this address: ednys2003@yahoo.com

J Edward Shaw Part I

2011-08-26T09:44:00.005-04:00

A couple of weeks ago I met Ed Shaw who is quite a unique man. There is so much to say about him that I decided to write two articles about him. I will tell you about Ed's past and how he got to where he is today; later I will focus more on his activism and volunteer work.

A Long Time Survivor

Ed Shaw was diagnosed with HIV in August 1988, at the age of 47. During that period he had a lot of acquaintances and friends that were hospitalized, so he decided to take an HIV test. He did not know much about the virus. During the 80s HIV was seen as a "white gay men disease". Ed felt he had nothing to worry about. Two weeks after getting tested, he found out he was HIV positive. The news felt like a death sentence; he never thought in his wildest dreams that he would live passed the age of 48. Little did he know; today he is 70 years old and has lived with the infection for more than two decades.

After learning his diagnosis, Ed shifted to what he calls "a panic mode". He lived in denial, ignorance and isolation. Ed took no medication, from between 1988-1993; his life was driven by drugs and alcohol abuse, a disease that impacts so many along with however promiscuity and other ill-conceived plans. He had given up on his life, spent all his savings and would not tell anyone about his HIV status. That destructive behavior ended when Ed was hospitalized in 1993. At the hospital he met a counselor who told him straight up he had AIDS. This incident opened up his eyes and he started asking questions. Slowly Ed started to build trust for the medical establishment and began to reeducate himself about the disease. This knowledge is something he has continued to share with others. Ed has spent a lot of time advocating for HIV/AIDS prevention. He told me that ever since he went to his first HIV meeting back in 1993; activism has been a constant and sustaining part of his life.

Aging with the Virus

Ed told me you have to make the right in order to live a long life with the virus. He had to make a lot of changes in the way he was living. Importantly, his family and friends supported him. He said that it is very important not to give up, even when coping with HIV it feels very hard. Despite his busy schedule, he makes sure to take time off to enjoy life. He has found new interests and has replaced the things he cannot do anymore.

I asked Ed why he thinks there is a rise in HIV/AIDS diagnoses among older adults and seniors. Firstly, Ed thinks there are older adults who have HIV, but have not been diagnosed. The reason for this may be that many misdiagnosed signs of HIV/AIDS are the aches and pains of normal co-morbidities of aging. Older adults are less likely than younger people to get tested or for that matter use condoms. Older adults are also less likely than younger people to talk about their sex lives or drug use with their doctors. Doctors rarely test older people for HIV/AIDS and therefore may prescribe medications for an ageing morbidity as opposed to HIV medications. Furthermore, doctors are less likely to ask older patients about their risky sexual behavior and or drug use.

Beginning in 1993, HIV/AIDS awareness has been one of Ed's top priorities. Over the past 15 years he has spent hours and hours on activism and education. All though Ed has been targeting older adults and seniors through his volunteer work he thinks it is very important to be as inclusive as possible. "We are all in this together". He strongly believes in an inter-generational approach. "HIV affects everyone and does not discriminate against gender, race and ethnicity, or where one lives and of course age". Ed underlines the importance of reaching family members and making sure everyone hears the message about how to prevent HIV/AIDS.

Next week I will tell you more about some of Ed's current projects.

J Edward Shaw

Sanna Klemetti

s.klemetti@globalaging.org

The Graying of AIDS

2011-08-12T10:32:00.004-04:00

This week I spoke with Katja Heinemann, Project Director and Visual Journalist, and Naomi Schegloff, Project Co-Director and Writer, of a project called “The Graying of AIDS.” Katja first produced it for Time Magazine in 2006, as both a photo and multimedia essay to draw attention to the aging demographics of people living with HIV and AIDS. Later, many persons wanted to use her essay for educational purposes. An Open Society Institute Documentary Photography Project grant provided the seed funding that allowed Katja to take the Graying of AIDS to the next level. Together with Naomi, they launched a three-pronged campaign designed to increase sensitivity and awareness about the issues confronting people over 50 years at risk for, or living with HIV and AIDS.

Before the “Graying of Aids,” Katja worked on a project about teenagers in the USA who live with HIV. Katja believes that modern treatments lead many to think the epidemic is over and that it’s not a big problem inwealthier countries. Katja wants to show that it is not over. However, many people in the USA do not get treatments for their disease. The stigma associated with the disease is still a huge problem. Katja and Naomi strongly believe that more people need to become more educated about this issue.

“The Graying of AIDS” has found different channels to share their message. The team focuses on informing older adults, their care providers and the general public. A big part of the website draws on stories that older adultstell about their lives with HIV and AIDS. These long time survivors help dispel the knowledge gap in our communities. “The Graying of AIDS”is also a public health project. Experts including older adults living with the virus, care providers, researchers, and activists carefully review the work. Katja and Naomi also collaborate with students from the UNC School of Journalism and Mass Communication and the Art Center College of Design Matters Program creating art and information exhibitions about the Graying of AIDS.

A Designer Mug

I asked Katja and Naomi about their future goals for “The Graying of AIDS.” The project continues; they add to their website as they go. Katja and Naomi both pointed out the importance of bringing in different perspectives by collaborating across disciplines. Together they offer two perspectives. They recognize that working with people from other fields will have a bigger impact in reducing the stigma and educating people. Their ultimate goal is to co-ordinate care, engage older adults, caregivers and the community to help people connect with each other’s humanity.

Please take a look at the Graying of AIDS website!

http://www.grayingofaids.org/

s.klemetti@globalaging.org

Second Session of the United Nations Open-Ended Working Group on Ageing (August 2011)

2011-08-11T15:30:00.015-04:00

During my three-month internship at GAA, I had the chance to observe some discussions during the Second Session of the United Nations Open-Ended Working Group on Ageing (OEWG) that was held August 1-4, 2011. The meeting focused on the situation of older persons in a world where longevity and ageism are new features. More, the gathered Member State delegations, experts, and NGOs, were considering whether to proceed further toward a Convention on the Human Rights of Older Persons. In short, is such a binding UN document needed ?

After the opening session, human rights experts explored “Violence and abuse against Older Persons” and “Age and Social Exclusion of Older Persons.” At the Plenary, discussions focused on “Identification of existing gaps at the international level and measures to address them, a topic which concluded the session.

What were my reactions, you might ask. I was a bit surprised by the ambiance in the conference room: very calm and quiet; no applause; no unrest or noisy demonstrators from any part of the room. It gave me the impression that nothing important was going on there and that the people just talked when they had to; this was of course false. I think that all the people in the room were highly involved in older persons’ issue in the world, even those who oppose a Convention or other instrument focused on the Human Rights of Older Persons.

Also, some Member States were very mobilized on the issue. The main speakers who supported a human rights document during the entire week seem to have come from Latin America along with Central America and the Caribbean countries. Unfortunately I did not see many African delegates and noticed few Asian delegations, with the exception of India and China.

I think that these four days succeeded in exploring many different issues faced by older persons in the whole world. Hopefully, a general conclusion has been drawn: the need to discuss today the rights of older persons. Why? First, the world is now starting to face an increasing ageing population, so issues on pensions, dependence and good health are much more visible. Second, the rights of older persons -even though known and recognized by an international and national framework- are not well respected both in emerging and developed countries. Everyone agreed that the UN and citizens everywhere need more research and more data about older persons’ abuses in order to target the biggest issues.

In contrast to the Member States, NGOs argued, in general, for a Convention.

Delegations did not change their positions between the first and the last day of this second session. The countries of MERCOSUR (Brazil, Uruguay, Paraguay, and Argentina), Chile and other Central American Countries strongly argued for a Convention that would provide a fundamental text to insure the respect and implementation of the Rights of Older Persons. For example, Chile argued that a study made by the Advisory Committee of Chile showed that:

- 25% of the population thinks that ageing is being dependent

- A lot of Chileans have negative ideas on ageing

- Some old persons prefer to stay at home, keeping isolated, as they think they are useless to society or even a burden.

According to Chile, the solution is an international process promoting intergenerational awareness. The European Union, China, Japan, US, Russia and New Zealand took the position that the existing non-binding framework protects the Rights of Older Persons and is, in their opinion, sufficient. They all pointed the need to implement the 2002 Madrid International Plan of Action on Ageing and to wait for its UN review in 2012.
However, the great majority of the delegates, NGOs and panelists supported the OEWG and encouraged its continuation. Many seemed to suggest that “Ageing” should be one of the priorities both at national and international level. Also some delegates, such as Switzerland and Canada, and NGOs asked for a Special Rapporteur on the Ageing issue.

The panelists’ presentations varied in quality. I found some really interesting; others more like an advertisement for the group they represented.
I had the chance to hear two great presentations on the situation of older persons in Africa, in different sessions: one about Ghana, the other about Tanzania. Both were really instructive showing problems older Africans face and how their countries try -or not- to solve them. Teresa Minja represented the Tanzania Social Protection Network talked about the shocking cases of persecution older women for “witchcraft” in Africa and, in particular, in her country. Due to traditional beliefs and a confused and unfair inheritance law, older women are sometimes accused of witchcraft and victims of different forms of discrimination (from exclusion and isolation to lynching and killing) as a method to take land “rights” away from widows. Ellen Borkei-Doku Aryeetey represented the University of Ghana tried to evoke all the problems faced by older persons in Africa: income insecurity, competition between young and old persons for scarce resources, lack of interest on the older persons issue in Africa and more.
Himanshu Rath, from the Indian NGO Agewell International, was really interesting as he gave us data and testimonies on the issues older Indians have to face: illiteracy, abuse from family members, in particular, the daughter-in-law, no resources, circumstances that force elders to remain invisible, a gender gap that renders many old women powerless and poverty-stricken. He pointed to these quotations: “Loneliness and the feeling of being unwanted is the most terrible poverty” (Mother Teresa) and “It is good to swim in the waters of tradition, but to sink in them is suicide” (Gandhi). Finally, he urged consideration for a UN Convention to assure the rights of older persons.
Oldrich Stanek, from the Czech organization, Zigo 90, that works with the European Union, gave a clear presentation during the “Age and Social Exclusion of Older Persons” session. He underlined that there were three types of exclusion older persons face: social, financial and from the labor market. He gave proposals to thwart this situation and presented two reports he had made to a member of power in the Czech Republic and European Union and as a guide of civil dialogue.
On the session on “Violence and Abuse against Older Persons,” the first two presentations had no direct link with the subject. Indeed, Claudio Grossman, from the Committee against Torture, just wondered about the need for another Convention while citizens already have the Human Rights Declaration with all the fundamental rights. Then, the presentation by Keren Fitzpatrick, an Asia Pacific Forum member, gave a general overview all the institutions and jurisdictions the Forum embraces.

Finally, during the last session, Marie Keirle, a delegate from France, synthesized the work and presentations of this week. She clearly identified nine issues on older persons:

- Need to discuss older persons’ issue now as the world is facing longevity and ageism; and many governments do not consider it an important in their states’ agendas;

- Existing discriminations (age and gender, economic situation, health, rural/urban) and their consequences on employment, access to health, public services Stigmatization and stereotypes, such as witchcraft;

- Poverty and financial abuse;

- Maltreatment from family members and employees in nursing homes;

- Physical and mental health, with focus on Alzheimer’s that has to be a priority issue according to member states, NGOs and panelists;

- Social exclusion;

- Education (illiteracy…);

- Equality before the law.

She also pointed, and I share her approach, what we need now:

- A partnership approach;

- Reliable data;

- A public debate and a political will on the subject,

- An intergenerational solidarity;

- A better access to services including health care;

- A work on the image the society has of older persons.

-Fanny Duval, Sciences Po Rennes, f.duval@globalaging.org-

HIV and Aging - A Report on NYC

2011-06-17T13:59:00.008-04:00

The U.S. Centers for Disease Control and Prevention (CDC) estimates that over 1 million adults and adolescents are living with HIV in the United States. New York City, the epicenter of HIV, has the largest amount of diagnosed persons in the United States. The HIV/AIDS time line began in July 1981, when The New York Times reported an outbreak of a rare form of cancer among gay men in New York City. This ‘cancer’ was identified as Kaposi’s sarcoma, a disease that later became known as HIV/AIDS. Emergency rooms in NYC began to see more and more seemingly healthy young men with flu-like symptoms and a rare form of pneumonia. This began what today is one of the biggest health concerns in modern history.

According to a study made by AIDS Community Research Initiative of America (ACRIA), almost 27 percent of all people living with AIDS in the United States are over 50 years old. In New York City this number goes up to 35 percent. Thanks to research and the introduction of highly effective antiretroviral therapy (HAART), mortality rates and increased life expectancy for people living with HIV and AIDS is higher than ever. Soon we will see a large number of senior citizens with HIV and AIDS. There are three groups of older adults with HIV, the newly infected, the newly diagnosed and the aging individual/longtime survivor. These groups have different but overlapping medical and psycho-social needs.

Research has demonstrated that older adults and seniors with HIV or AIDS face multiple forms of discrimination. Not only do they face the everyday discrimination everyone with HIV and AIDS confronts, but they also have to deal with discrimination related to their age and their health care. For example, a lot of physicians do not perceive older adults to be at risk for HIV infection; and therefore they are less likely to be tested for the virus. In fact, a study of people between the age of 60 and 79 years old who had died in a long-term healthcare facility found that five percent were HIV antibody positive although none had been diagnosed with HIV.

Seniors in the context of HIV and AIDS have somewhat become invisible. They are rarely targeted in HIV prevention campaigns and therefore, they may not realize that their behaviors can put them at risk for HIV infection.

Some two out of three HIV infected older adults in NYC suffers from depression. Depression for older people can be particularly destructive. Caregivers often fail to recognize the symptoms of depression in the elderly; it is often seen as a characteristic of aging rather than an illness. Loneliness and HIV related stigma are two major reasons for the high numbers of depression among HIV positive older adults.

Even though nations and individuals have made progress in treating this condition, HIV and Aids is still highly stigmatized. A lot of older adults feel ashamed and guilty about their condition and don’t feel comfortable telling their family and friends. We can speculate that HIV and AIDS are often related to sex and drugs which may make some people uncomfortable and they would prefer not being associated with it. The study made by ACRIA showed that fewer than half told all their family members and only one-third told their friends that they were HIV positive. Older adults and seniors grew up during a time when discussions about sexuality were considered improper or vulgar; one simply did not talk about sex in the same way that we do today. Some individuals who chose to tell friends and family felt that the ignorance about how HIV is spread still is a problem. After they revealed their illness some felt that people around them would for instance stop touching them and reject them. For example, one person said that after revealing his illness to his family, they would give him plastic plates, knives and forks. Some of these problems even occur within health clinics.

What can be Done?

It is essential that researchers start conducting more research targeting the older population. Many people with HIV infection are now living long enough to experience HIV as a chronic illness. More research is needed on HIV/AIDS and aging, so that we can understand the interaction and overlapping with age-related symptoms and HIV. We need to change the knowledge level and attitudes towards HIV and aging. To prevent new infected cases, we need to start campaigns that specifically targets older adults. Physicians must challenge the myths and start asking older patients about their sexual activity. Doctors must not overlook the possibility that older people are at risk for HIV. If we can do this, I think we come a long way.

S.Klemetti@globalaging.org

To read the study please visit http://www.acria.org/

Older People Testimonies from Around the World

2011-06-17T11:12:00.020-04:00

The second session of the Open Ended Working Group on Ageing is coming up in August. Registration is now available for NGOs holding consultative status with the ECOSOC Council of the UN. Global Action on Aging believes that others - organizations or individuals - who do not have this status should be able to describe specific human rights of older persons that they need in their countries. GAA asked its subscribers to send testimonies about how the cutback in pensions, social security and health services impacts their daily lives. Here’s a sample of letters that we have received so far. Send yours now! We will keep updating as we have more.

Turkey

In Turkey I see human rights abuse when retired workers do not receive equal salaries or equal social security payments. Cafer Tufan Yazicioglu. http://mailto:tfnyazici@yahoo.com/

United States of America

JJ and I have been married for over 60 years. Most of those years we paid taxes and did continuous volunteer work. JJ is a retired World War Two naval veteran. His frightening diagnosis of Alzheimer’s interrupted our retirement years. The State of Oregon and Lane County offer us coordinated programs (free or reduced medical care) and half time domestic care each day. We benefit from the services of local care people who are trained for this work. They have training and education in nursing and therapy. These services are necessary for a healthy nation. We are saved from the “poor farms” and the breadlines of the US Depression.

United States of America

I could not continue to live as I do without Sec. 8 (for housing) and Medicare. I also have insurance through AARP for prescription medicine but I do not take any. I urge you to listen to the CD from Interface Voices for early June - an interview with a Dr. Agrian (??) who speaks so well for those of us who, though aged (I'm 87 but not infirm), are often presumed to be unable to participate in politics --or, in the name of gov. programs are prevented from keeping ourselves and others informed. You can get information about that interview from Maureen Fiedler

Maureen@interfaithradio.org

United States of America

It is fact that UN is moving toward defining and guaranteeing older persons’ human rights. But will these rights guarantee the legitimate dues to employees who have retired from a profit- making PSU of Govt. of India during 1996 , followed by divestment in 2000? Many of these employees who are still alive have been fighting for their small dues which a negotiating body mismanaged. We believe that the negotiating body ruled that the employees’ service condition did not include a pension benefit.

How to fit HIV/AIDS treatment in the migration track?

2011-06-15T10:04:00.006-04:00

In today’s globalized world, more people are on the move than at anytime ever recorded in the history. This migration is challenging nations-states and their “rigid” borders. At a UN side event that took place during the High Level Meeting on AIDS, William Lacy Swing, Director General of the International Organization for Migration (IOM), stated that there are approximately 1 billion migrants in the world, one third of whom are international.

Why are they migrating? Some move for political reasons; some to make extra money. For others it is a matter of survival, such as for the thousands of Syrians who have fled to Turkey in the since late May 2011. Unfortunately, migrants don’t always find a better or safer place than the one they left behind. Think of the overcrowded refugee camps or windowless cell-like dorms where some labor migrants settle in order to find jobs and to send remittances to their families and others back home. Those who begin this process may be in good health; however, bad living conditions nearly always compromise the migrants’ health.

People who are part of the migrant stream often confront HIV, an issue that emerged during the conference. I was attracted to this session by the flyer that posed the following question: “Ten years after the Declaration of Commitment on HIV/AIDS, what have we accomplished?” One of the speakers, Dr. Sophia Kisting, International Labour Organization AIDS Director, said that millions of dollars are being spent for testing migrants, but not a single penny is spent for treating those whose tests are positive. Moreover, the authorities testing migrants do not share the results with them. Dr. Kisting said this failure to inform migrants leads them to believe that they are HIV-free. However, we now know that if the disease is diagnosed at an early stage, people with HIV can live long lives. By not telling the migrants whether or not they have HIV, the researchers are killing migrants chance to live and also contributing to more HIV cases as they engage in sex.

Another speaker, Mody Guiro, President of the International Trade Union Confederation of Africa, raised the issue of vulnerability of female migrants. He said that most women refugees or IDPs cannot afford to buy antiretroviral treatment. Also, if migrant worker are subject to compulsory HIV testing they lack freedom of choice or discriminatory treatment Even if migrants secure medications, they risk death if they deported because of their HIV status; their treatment stops and they eventually die. The big question is how to treat lifelong diseases like AIDS while migrating?

The last speaker, Rhon Reynolds, representing the European AIDS Treatment Group, African and Black Diaspora Global Network on HIV/AIDS summed up HIV and migration relation in five Ds: discrimination, deportation, detention, dispersal and destitution.

More than 30 years have passed since the first cases of HIV/AIDS were discovered. Once known as the “gay cancer’ and fatal, AIDS today is a treatable disease if diagnosed at an early stage. However the stigma against HIV positive people still remains alive and well.

Duygu Basaran, d.basaran@globalaging.org

Interview with Dr. Tarek Shuman

2011-06-14T15:32:00.010-04:00

I recently had the opportunity to interview Dr. Tarek Shuman-- Director General of the First World Assembly on Aging (1982) -- to get his thoughts and recommendations on the important issues in the area of aging.

His early years of Social Work education led him to realize the great potential of the then relatively new and fast expanding field of aging. His doctoral dissertation focused on aging workers, social security and pensions, grounded in the belief that the aging field should go beyond the ever popular “humanitarian” role that focused on healthcare, homes for the aged, nursing homes and recreational activities. Shuman argued for a “developmental” role that goes beyond individual older persons and embraces the impact of population aging on society as a whole. And so, according to Dr. Shuman, the First World Assembly on Aging was a first attempt, though with very limited success, to redirect the attention of policy makers and gerontologists to the complementarities of these two roles.

I asked about how he evaluated the efficiency of outreach programs to educate people about aging issues. He answered that they are disappointing as any approach being taken-- whether by governments or NGOs-- is still incomplete. Most researchers still ignore the “developmental” side of the story; he believes that the field of aging is not balanced.

On a final note, Dr. Shuman was kind enough to give me personally, and GAA interns in general, some words of encouragement and advice. He praised the work we are doing here and how important it is to take what we learn here back to our countries. My country Lebanon, for example, has not yet matured in this field. It does not go beyond the humanitarian charitable issues of aging. Hopefully, my education can someday inform and encourage policymakers in Lebanon and help this country catch up with the rest of the world.

Dalia Sayess; d.sayess@globalaging.org

Faith-Based Action to Achieve Universal Access

2011-06-10T10:09:00.006-04:00

“Faith- Based Action to Achieve Universal Access- Confronting the Impact of Funding Cutbacks and Advocating for the Special Needs of Mothers and Children Living with HIV” (June 8, 2011)

This side event, held in conjunction with the UN High Level Meeting on HIV/AIDS, focused on Catholic Church- sponsored programs with regard to the impact of funding cutbacks and flat-lining children and women living with or affected by HIV. Panelists included a number of experts in the field. Dr Paul De Lay of UNAIDS described how 10 years ago everyone thought that there was a limitless supply of money, until two years ago when they faced a flat-line. He described the 4 milestones of the faith-based organizations’ (FBOs) AIDS programs, which are bridging the health sector with ministries and the private sector, meaningfully engaging those mostly affected, debating the issue of gender inequality, and openly discussing sexuality. Becky Johnson of CHAN discussed the outcomes of a report done on developing countries; as of end of 2010, 6.6 million people are on anti retroviral treatment (ART) with 9 million still left without medications. Organizations are facing flat-lining and budget cuts because there is no commitment for funding. She praised FBOs for providing up to 70% of health services in African rural areas and providing ARTs to over 90,000 people. Reverend Vitillo of Caritas mentioned some obstacles to universal access including a lack of access to fixed-dose medicine combinations and late or no diagnoses for pregnant women. He also stressed the need to address multiple infections, not only HIV. Moreover, Sr. Alison Munro of South African Catholic Bishop’s Conference highlighted the unsustainability of treatment costs, the fear of stigmas and thus non-disclosure, and the insufficient health personnel in some public sectors, such as South Africa.

Dalia Sayess from Global Action on Aging

2011 UN High Level Meeting on AIDS

2011-06-09T14:43:00.004-04:00

During the 2011 UN High Level Meeting on AIDS, I had the opportunity to attend two side events. This year, the Meeting focused on universal access to treatment. Although older persons attended both meetings, older people were not specifically mentioned. I had assumed that with the talk of universal access, all people infected by HIV/AIDS would be taken into account and that the topics and information would apply to older persons as well.

On June 7, I attended a meeting organized by Médecins Sans Frontières and the African Union. The topic of this event was “HIV Treatment: Reducing deaths, illness, and HIV infections while keeping costs down.” Some numbers came up frequently: 6.5 million people currently get antiretroviral therapy (ART); nevertheless, 9 million other people living with HIV/AIDS have not access to ART. The panelists underscored the need to provide treatment to these people. First, treatment saves lives. People with AIDS live longer and in better health than they would without treatment. Second - and this may be the most important means to stop or at least control the epidemic- is that having HIV positive people under treatment reduces transmission and can help stop the spread of the epidemic. But once you say that, another striking number is mentioned. Between 2011 and 2020, indeed, 12.2 million new people are expected to be infected. So the question comes up about how to treat all infected persons. Who will pay for the drugs? How can poor people afford drugs that are still expensive? Two panelists mentioned the role of government. For instance, the South African government recently decided to put all people living with HIV on treatment. Brazil, since its 1996 law has defined health as a right, now provides medication to everyone who needs it.
But the major challenge concerns the price of drugs. While pharmaceutical industries benefit from patents, the most effective way to decrease drugs’ prices is generic drugs competition. Unfortunately, this competition is challenged by developed countries that want to assure conformity with the TRIPS (agreement in the World Trade Organization on intellectual properties). So is there were we stand? Expensive drugs because of patent protections and actual funding cuts in AIDS programs since 2009? What should have precedence? Health or Profits?

I attended a second session on June 8 titled, “Faith-based Action to Achieve Universal Access.” Here the panelist described funding cutbacks, but the emphasis was more on mothers and children living with HIV. In some African countries faith based organizations provide support of up to 70% of the HIV positive population. For them, budget cuts mean more difficulty to access drugs, scarce nutritional support, and no access to ART for new patients. As traditional funding decreases, it is necessary to develop new ideas for revenue resources, such as the Air ticket tax implemented by UNITAID. Panelists also mentioned the need to develop better combinations of drugs, especially for children. But this idea can be extended to adults and older people as simpler and fixed-dose drug combinations help decrease the prices. In addition, a lower price will likely increase the demand as more countries and/or organizations can afford to purchase the drugs. Increased demand is likely to attract more pharmaceutical industries competing and eventually lowering prices.

To conclude, I would like to say that according to what I heard, universal access can be achieved. Dr. Bernhard Schwartlender, a UNAIDS worker said this was financially and technically possible. Of course, funding at the level of $22 billion annually by 2015 is needed too. I tend to agree with Dr. Bernhard Schwartlender: “[Fighting AIDS] is not a question of paying now or later; it’s a question of paying now or forever”. So what are we waiting for?

- Aude Feltz

Interview With Ann Dillon

2011-05-27T10:42:00.004-04:00

Last week I visited a colorful woman named Ann Dillon. This very alert 94-year-old has a lot of things going on. We talked in her apartment on the Upper West Side.

Ann Dillon

Ann Dillon was born in New Jersey in 1917. Since then she has lived in a lot of different places. Back in the day, she said, you had to take a ferry from New Jersey to get into Manhattan. Ann has also lived in Denver, Colorado. This is where she studied to become a Medical Laboratory Technician. She loved using the microscope and thought it was astonishing to look at blood samples. Ann was in the middle of her internship when her husband left to serve in WWII. This meant she had to quit the internship and move back to the East Coast. It also meant she did not get a chance to finish Medical School.

After the War ended, Ann went back to school, not to study medicine, but to become a teacher. Her husband was a professor at a college in New Jersey. One day one of the teachers in a Elementary School was sick and Ann was asked to substitute. This was when she discovered her love for teaching. After this experience she got herself a Master's degree and worked as a teacher for many years. Every time Ann has gone to school, she was able to get scholarships from the State of New Jersey.

She took jobs on the side to pay for room and board. Back in Denver she would wait tables after classes, and when she was done at 9 pm, she would crawl back through the window to do her lab-work. Even though she was a busy young woman, she still did very well in school. Ann told me that one night, when she was waiting tables, one of her professors came into the restaurant. He recognized her and said that she was the student who had earned the highest points in his class. Ann was so diligent that she even got a scholarship to study abroad for a year. She decided to go to the United Kingdom, to a town called Durham.

The first thing she told me was that she had a daughter, Dr. Mary Jane Koren, a geriatrician. Ann and Susanne Paul sat together to hear Dr. Koren speak about aging issues at a large public event. A compelling speaker, Dr. Koren outlined many critical issues facing older people. This chance meeting helped build Global Action on Aging; Ann became an active volunteer with GAA and her daughter an excellent resource for new ideas in engaging older persons productively.

I did not get to meet Dr Koren since she was at the hospital with her pet dog. Not an ordinary pet, this is a hospital dog. Every now and then, Dr Koren takes her dog to a hospital to cheer up people who are ill.

University of Durham

Throughout her life Ann traveled a lot. She circled the world no less than three times. One of her favorite places on earth is Beijing, China. When she was younger she took a train all the way from Moscow to China. She told me she was very impressed by the fact that the Chinese had built the Great Wall of China with no machinery. Ann loves Chinese art and culture so much that she is a volunteer at the China Institute in New York City. Every Monday she works at their gallery. When Ann is not volunteering, she likes visits different art exhibitions around New York City.

Ann told me that she has donated her brain to science. When Ann passes away, her brain will go to a research hospital. I wanted to know why; she told me that she has always been very interested in medicine and science. She believes donating her brain can push science even further. Alzheimer's disease has always been a confusing matter for scientists, and Ann thought, since she is a 94 year old who shows no signs of Alzheimer's, she might be able to help research move forward on this particular matter.

I asked Ann what she thinks helps her stay so active and alert. She told me that she thinks it is the exercise she does every day. She exercises 30 minutes every day in her building's gym. Whenever she can, she uses the stairs instead of the elevator.

I think everyone can learn something from Ann. Ever since I met Ann, I have taken stairs instead of the escalator or elevator. I would love to be as active and alert as Ann when I am 94 years old.

Sanna Klemetti s.klemetti@globalaging.org

Visiting Nursing Homes With Chiquita Smith

2011-05-20T09:41:00.007-04:00

Last week I visited two nursing homes in Brooklyn and Queens with Chiquita Smith. Previous interns have been on similar visits before me, but they went to different places. Chiquita Smith is quite an interesting person. She devotes a lot of time to defend the rights of nursing home residents. To find out about residents’ living conditions, she travels to different nursing homes every couple of months. She brings interns from Global Action on Aging to see how poor elders live in such nursing homes. Chiquita lost her vision a number of years ago due to diabetes.

Our first stop was at Cobble Hill Health Center. This nursing home is located in downtown Brooklyn, a big building in the middle of an urban jungle. It is a non-profit nursing home and has a total of 570 beds available. When I first walked in, I could not decide if it felt like I walked into a school or a hospital. The big dining room and the wall decorations reminded me of my old elementary school back in Sweden. Soon enough I realized I was not in a school but in a nursing home.

When we arrived, it was time for the residents to have coffee in the 'common room'. Quiet music was playing in the background. Slowly, one resident after the other joined us. We sat down with Chiquita’s good friend to talk. Chiquita told me she has two main concerns when it comes to nursing homes: whether the residents get a chance to go outside when the weather is nice, and if they get help to vote during elections. We were told that the Cobble Hill seniors used to go out. But no longer, unless they are capable of going outside by themselves. During elections there is some assistance available. I looked at their weekly entertainment schedules which suggested that indoor activities had been planned for them every day of the week. This is good, since social interaction is important at any age. However, three things bothered me. The first one was how residents and employees interacted. I felt that a lot of the caregivers were talking 'over the head' of the residents or as if they were not there. In the middle of coffee time the fire alarm went off. It took a very long time until it was turned off. The sound was very loud. As this was going on, an employee of the nursing home said to me:

- ”Thank God for the paycheck.”

At first I was not sure I heard her right. I thought that this comment was highly inappropriate. Not only is it troubling hearing this ironic remark from a person who is working with human beings that are depending on them, but it also confirmed my observation about poor communication and apparent disrespect toward the residents. We read about understaffed nursing homes all the time. We know that understaffed nursing homes can lead easily to abuse and neglect of the elderly. Almost 50 percent of all nursing homes in the United States are short-staffed; this situation leads to employee burnout and stress. Why is nothing done? Is the answer as simple as money? Unfortunately, most nursing homes are for-profit businesses; one of the easiest ways to increase profits is to reduce staffing costs.

The second nursing home we visited is located by the ocean, in Far Rockaway, Queens. The Bezalel Nursing Home is rather new and has 120 beds, smaller than the average in New York City. The ride to get there took about 1 hour. The closer we got, the lower the landscape became. After a while, you could even smell the salty fresh air from the sea. We arrived around lunchtime which made it seem a bit chaotic. The dining room was on the main floor. All the seniors were on their way back to their rooms. This made the line to the elevator very long.

Meanwhile, waiting for Chiquita's friend to finish his lunch, I took a look around and discovered a nice outdoor area where some seniors were sitting. Even though we arrived during a busy hour, the dynamic between the residents and the care givers seemed good. We also got the chance to see the room of Chiquita’s friend, Frank, which he shared with one other person. Chiquita wanted to know how Frank liked living at Bezalel Nursing Home. He told us that the staff is friendly and he gets to go outside. The only thing he complained about was that he did not get any help during election campaigns in order to exercise his right to vote. Except for the last detail, I got a pleasant and warm feeling about the atmosphere in Bezalel Nursing Home.

After visiting these two nursing homes, I think I got a good introduction to how elder-care can look in the United States. I can only compare it with my experience in Sweden; and it looks very similar. The biggest difference is that you do not share your room with anybody and when you move into a room in a Nursing Home, you bring your own furniture. The exception is the bed since the nursing home wants a special hospital bed.

The two nursing homes were lacking one thing each: Cobble Hill did not offer opportunities to go outside, while Bezalel Nursing home failed to assist during elections. Perhaps the location had something to do with this situation. Helping seniors to vote is easier when you are in the city, but all the traffic and the lack of space might make it hard to find nice outdoor areas. Going to a nice area requires more time. And while a nursing home located close to the beach might make it easier to help seniors to go outside, the distance to the city might make it harder to assist them during an election. I don’t think the main responsibility lies on the nursing homes, but that does not mean they shouldn’t make the effort to ensure their residents human rights. This should not be an issue since there are laws that handle this. The Voting Accessibility for the Elderly and Handicapped Act of 1984 generally requires polling places across the United States to be physically accessible to people with disabilities for federal elections. Where no accessible location is available to serve as a polling place, a political subdivision must provide an alternate means of casting a ballot on the day of election. This law also requires states to make available registration and voting aids for disabled and elderly voters.

Sanna Klemetti
s.klemetti@globalaging.org

Demographic Changes Challenges Sweden

2011-05-10T16:40:00.009-04:00

After attending the first session of the UN’s Open-Ended Working Group on ageing I wanted to take a closer look Sweden. The reason why is not just because it’s where I’m from, but also because I have experience working with what we in Sweden call Home Help. This program, Home Help, is a part of the public health sector. It makes it possible for older people to keep living in their own homes and receive the individual help they might need-, such as cleaning, cooking, shopping, or to accompany the older person to the dentist or doctor. As I worked in this job, I learned how older people live Sweden.

Sweden has a fairly small population of about 9.3 million people. Around 19 percent are aged 65 or older; few other countries have such a large proportion of elders in the population. Sweden has one of the world’s longest life expectancies and one of the lowest birth rates. As the 1940’s baby boomers age, these numbers are expected to grow faster and in greater numbers than ever before. Up until now, Sweden has been able to manage and provide well for its older citizens. For instance, in 1982 the Social Services Act stated that all individuals have the right to public services at all stages of life. Everyone who needed help with his or her daily life had the right to claim assistance if they were unable to meet their needs in any other way. The Swedish welfare policy provides an “old age pension.” Everyone who has reached the age of 65 years, regardless of income, gets a certain amount of a state allowance. Now, the current demographic developments are challenging this policy.

Mats Thorslund, Professor in Social Gerontology, at Karolinska Institutet, a medical university in Stockholm, has researched the trends in the living conditions and health of the older population. Thorslund’s studies outline some of the biggest problems Sweden faces as the number of older persons increases. He argues that the government is failing to look at the numbers in a realistic way. As the aged increase in the population, the government does not have sufficient programs available for those who need care. People with dementia are always a first priority. But if the existing facilities are filled, there will be no spots left for the rest. This implies that the Swedish communes will need to hire more people to work in this field. The government needs to set priorities A rarely mentioned problem is the low wages in the health care field as well as the need for workers who have sufficient at the salary in this field is low and the job requires physical strength. Women dominate this field and often end the career with a worn out body.

Thorslund also found that there are visible gender and class differences. Social status and class correlate with health and functional capacity. This is more visible among men than women. When facing dependency, the majority of old men receive care from spouses, while old women rely on relatives or public care. Men have higher odds of receiving care. A 2002 study showed that elders’ health has worsened. This information contradicts data from other parts of the world. How can this can be possible? What does this indicate? Could it have something to do with the fact that a lot of the Swedish older people live by themselves?

During my job with Home Help, I discovered that older people who lived by themselves often felt lonely; my visit was the highlight of their day. Some of them had families who would come and visit, some of them did not. I always felt sad that I was on a tight schedule and could only offer limited time to them. Because I worked in the countryside, I noticed that the resident felt more isolated; there was a lot of space in between the houses and most of them were very limited as to how much they could move outside their own homes. Although Sweden has social programs and events for older persons, I noticed that the government cuts the older persons’ programs first; this is where it hits hard.

Thorslund and his research team have finished a number of research studies but the results have not been used in the best way possible. Need no longer determines policy; rather it’s the economy. Some theorists suggest that the needs of the increasing number of very old Swedes will change the government’s model of the welfare state. No longer, they say, will Sweden provide its older citizens with care and support on equal terms. In 1970 Sweden reached its highest level of service and care for the old. If Swedes want to stay in this position, it will have to examine where the national resources are going—to the wealthiest? To the best connected to the government? Banks? Industrial profits? A Monarchy? Other? Older citizens have been aging for more than 60 years and more will come. Swedish citizens will have to decide where they want their taxes to go. This challenge faces not only for Sweden, but many nations.

Sanna Klemetti

s.klemetti@globalaging.org

Observations from the First Session of the Open-ended Working Group

2011-04-29T09:20:00.005-04:00

On April 18, I attended the meeting of the first working session of the Open-Ended Working Group at the United Nations Headquarters. Speakers and UN Delegations focused their attention on the current status of human rights of older persons around the world.

If you’ve not heard about the Open-ended Working Group, the General Assembly created this forum on December 21, 2010, with Resolution 65/1862 on December 21, 2010. UN delegations addressed elder rights in their countries and regions but also learned from each other and experts about the effectiveness of such protections. Later on, they will vote to decide whether a human rights instrument that is binding on countries is required to strengthen the protection of human rights of older persons.

After the session opened, national delegations that wanted to make a statement did so. As I listened, I began to understand where they currently stand on a convention to protect older persons’ rights. I recognized some trends from different regions. The European Union had negotiated its position earlier; it was presented by Hungary on behalf of the EU. Hungary, France, United Kingdom, Switzerland, Sweden and Denmark all pointed out their already existing protections that they claimed were already protecting the human rights for older persons. Denmark focussed on healthcare, saying that universal social protection – both in terms of cash transfers and social services – is a key component of the Danish welfare model. And the Danes said that their social service meets individual needs. I noticed that they failed to note the older people in our societies that are not in need of healthcare but do suffer from economic exclusion, isolation and discrimination. These individuals are more invisible than the ones who need direct medical help. I am not surprised by this, coming from a Scandinavian country myself. I know most responses are based on the individual. While this is often a positive approach, the downside is clear. If older person are not in direct need of help, they are easily forgotten.

The United Kingdom did not make a very long statement. The UK promotes active aging, with most of the responsibilities on the individual. Switzerland pointed out that they have had a long history of social services and protection for their older citizens. Poverty is not a problem in Switzerland. France was the first and only country that specifically addressed older women.

The only two nations that made it clear they wanted a convention were Argentina and Chile. Argentina emphasized that there is (1) no legal binding international protection for older persons, and that (2) the only other convention that directly refers to elder rights is the Convention on the Elimination of all forms of Discrimination against Women (CEDAW). Argentina also pointed out that the majority of older people do not have disabilities so the rights in the Convention on the Rights of Persons with Disabilities cannot be applied to them.

The United States’ spokesperson shared a lot of its ongoing programs and protections for the older people. It appeared that the US does not see any major ongoing problems in the country. But, it recognized that older people around the world continue to experience discrimination and violations. The US recommended continuing discussion on aging rights.

From a less individual perspective, Syria, Qatar and Pakistan spoke. They cited the importance of the family as the foundation in society, instead of the individual, with a critical position toward the idea of universal human rights. This is when China’s approach became interesting. China put a lot of emphasis on the importance of the fact that countries are diverse in terms of economical and social conditions, as well as historical and cultural traditions.

China argued that Member states should address the aging issue on the basis of their national conditions and different development levels. I was not surprised by China’s statement. It seemed that China favored a regional solution. It is also important to keep in mind that China values its sovereignty. I believe that China will play a huge role in the outcome of this proposed convention.

On the whole, all countries claimed they were interested in participating in the upcoming debate regarding human rights for older persons. They all agreed that world citizens now face the fact that humans live longer and that pressure to meet the challenges of aging will become greater. The regional trends are visible, and as we can see, the world is divided at present about approaches to this new challenge. The Open-ended Working Group’s Chairman, H.E. Mr. Jorge Martin Aguello, (Ambassador of Argentina), was indeed correct when he said that this mission is ambitious. Meanwhile, as we wait for the second OEWG session that is coming up in August, NGOs must target those nations that seemed the least open to the idea of a convention and persuade them to find useful ways to protect the human rights for older persons.

Sanna Klemetti
S.Klemetti@globalaging.org

News from the Open-Ended Working Group

2011-04-18T17:14:00.002-04:00

The UN launched its long-awaited Open-Ended Working Group on Aging today at the UN. The Argentine Ambassador presided over the meeting. Some 17 Member States gave short speeches outlining their aging rights policies. Diplomats from Denmark, Sweden, China, Chile, South Korea, Canada, Switzerland, Argentina, Japan, the UK, Syria, Qatar, Pakistan, United States, and France offered short summaries of their perspectives.

What were their views about a human rights instrument? It’s too early to tell clearly. Most diplomats described programs that were working well in their nations and almost all acknowledged the anticipated upsurge in the proportion of older people in their population. Argentina and Chile spoke eloquently about the need for human rights for older persons. The Arabic-speaking countries stressed family supports for older persons. Unfortunately, no speaker from Africa was present.

On the NGO side, Bridget Sleap (HelpAge International) and Susan Somers (International Network for the Prevention of Elder Abuse) and Jane Barratt from the (Coalition to Strengthen Older Persons Rights) offered the perspective of their organizations. GAA is a member of the latter group. Jane laid out the long list of documents that the UN had already adopted but were not binding on nation states. The result? Slow progress. She urged the Open-Ended Working Group to press forward with a binding human rights instrument.

The OEWG meets again tomorrow. We’ll be back with more reports on what’s happening.

Susanne Paul for Global Action on Aging

Generations Unite for Music

2011-04-15T10:57:00.013-04:00

Music plays an important part in our lives. From the moment we are born, we learn with the help of music. It’s been proven that young children develop through music. And today we even learn the alphabet by singing. Studies have shown that senior citizens can benefit from music as well. Music can give us a happier outlook on life. It can also help seniors with concentration and awareness, improve memory, and may also increase mobility and coordination.

On April 5^th I visited an outreach concert at the Hamilton Madison City Hall in Manhattan. Founder and executive director of Concerts in Motion, Jennifer Finn, together with Suzuki Music teacher Jenny Pham, worked hard to make this event happen. Children from the ages 2 – 6 years old were invited to perform in a concert for the visitors at the center. In return, some seniors would perform for the children.

Jenny Pham and Jennifer Finn

Concerts in Motion, a non-profit organization, was founded in 2009. It provides private and group concerts performed by professional musicians alongside musically talented young people from New York City. I wanted to know how Jenny came up with the idea for Concerts in Motion. She told me that she used to work as a professional opera singer. Before an audition, she would often go to practice and perform the song at nursing homes. She discovered how much the audience appreciated her performances. Thanks to her enthusiastic audiences, Jenny decided to give up her career as a singer and founded Concerts in Motion. Today Concerts in Motion offers about 6 – 10 performances per week and serve elder patients at over 25 different agencies. Jennifer also told me what an impact live music has on people’s lives. Some think that the vibration created when live music is performed acts communicates with the listeners, sort of a life force that is not just heard, but also felt in the bodies of all who hear it. Jenny reminds her older listeners that they can experience the pleasure of their bodies, hearts and minds through the power of music.

The event got started when the children performed for the seniors. Children of all ages participated at different levels. Older children students played “Twinkle Twinkle, Little Star,” on violins, accompanied by piano. The younger ones who are still learning the violin participated with violins made from paper. The concert included a few piano performances, a singing duo performing “America the Beautiful,” a recorder performance, and last. The music teachers performed a minuet.

Promising student

Duo

The senior choir began with “America the Beautiful,” in both Mandarin and English. The male choristers came next, singing “Edelweiss.” Two dance performances and a beautiful solo performance, in opera style, finished out the concert.

Conductor Mr. Jia Zhen Song practices with his choir ones per week at the Hamilton Madison City Hall. The City Hall Senior Center Chorus is very good and has attracted a number of New York City engagements to preform.

Dance performance

At concerts’ end, the audience made clear its enjoyment. I thought that the performers and the performances impacted the seniors. It’s time to figure out more ways to increase seniors’ access to relevant music experiences. For upcoming events, please visit Concerts in Motion’s website:

http://www.concertsinmotion.org/

Sanna Klemetti

s.klemetti@globalaging.org