HIV and Aging - A Report on NYC

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

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?

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

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

“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

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