June 5, 2011

June 5, 2011
30 Year Anniversary of HIV

Welcome to another day in my life. Today is Sunday and it is also the recognized 30th anniversary of HIV. I hope you are having a safe and great weekend so far. It is another busy one for Dab the AIDS Bear while doing the AIDS Life Cycle from San Francisco to Los Angeles.

I thought about blogging about the 30 years of HIV since the bear and I have been involved since the start of the epidemic. But honestly, the memories (especially during the first fifteen years) are just too painful and raw.

So instead I will share a slide show and an article from the Body featuring some comments by me:

This Sunday will mark the 30th anniversary of the first reports of AIDS in the United States. This week, physicians, policy makers, and the HIV-positive community have paused to reflect on the progress that has been made in combating the disease, as well as the long road still ahead toward eradicating the virus. The anniversary also provides a time to remember the lives that have been lost to AIDS, both in the U.S. and around the world.

“Many of us have been touched by the disease, be it a family member, a loved one, or a friend,” said Surgeon General Dr. Regina Benjamin in a White House video chat earlier this week. Dr. Benjamin’s only brother died from AIDS nine months after being diagnosed with the disease, shortly before the advent of highly active antiretroviral therapy (HAART).

In an interview with The AIDS Beacon, Dr. David Margolis, a professor of medicine and infectious diseases physician at the University of North Carolina School of Medicine, said that researchers have made a lot of progress with the disease but still face difficulties in the years ahead.

“One way of looking at it, we’ve done an amazing job of controlling the disease and allowing people to live largely normal lives. On the other hand, we have so far to go,” he said.

Three Decades Of Scientific Progress

In some ways, the story of HIV and AIDS represents a triumph for modern science. In 30 years, AIDS has gone from a disease of completely unknown origin to a well-understood and treatable illness.

“We’ve accomplished more in so many ways, in dealing with HIV, than almost anything in medicine that I can think of,” said Dr. Margolis.

In the first reports in 1981 and 1982 from the Centers for Disease Control (CDC) of what would later be called AIDS, researchers had no notion of what the disease was or what caused it, much less how to treat it. By 1983, however, scientists had discovered the virus behind AIDS and how it was transmitted. By 1985 there was a blood test available to diagnose those infected with the virus, and by 1987, scientists had developed the first drug to treat it: zidovudine (Retrovir), then called AZT.

Today there are more than 30 drugs approved to treat HIV, and while they cannot cure it, they can keep the virus suppressed to such low levels that it is not detectable in standard blood tests. Those who are diagnosed and treated early can expect to live roughly a normal lifespan.

For a field that moves as slowly as science, said Dr. Margolis, the feat is remarkable. “I can’t think of any other disease, certainly, that has gone from nothing to this in 30 years,” he said.

Dab Garner, an HIV activist and educator, agreed that enormous progress has been made since the 1980s. “Hopefully I will be around to celebrate my 60th year of living with HIV and AIDS,” he said. The thought was almost unheard of when he was diagnosed with HIV in 1982; he was 19 years old at the time, and did not expect to live to see his 20th birthday.

The Journey Ahead: Still A Long Way To Go

As far as research as come, however, most in the HIV/AIDS community agree that there is still a long way to go, both in terms of scientific progress and social issues and policy.

In 1984, Margaret Heckler, secretary of the U.S. Department of Health and Human Services, thought a vaccine for AIDS would be available within the next two years. Twenty seven years later, there is still no vaccine to prevent AIDS and no cure for it. The virus has spread to an estimated 34 million people around the world and is thought to have killed more than 25 million since 1981.

“As we enter the fourth decade of the HIV and AIDS epidemic, the current situation in which large numbers of new infections occur and HIV-infected persons require lifelong therapy is clearly not sustainable,” wrote Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases (NIAID), and Prof. Carl Dieffenbach, director of NIAID’s Division of AIDS, in an article published this week in the Annals of Internal Medicine.

In their article, Dr. Fauci and Prof. Dieffenbach outlined three goals for HIV/AIDS researchers in the years ahead. These include expanding access to HIV testing and treatment; finding a cure for HIV; and finding more effective ways to prevent the disease, such as a vaccine.

The authors admitted that achieving these goals would be difficult. However, with multiple clinical trials underway to test vaccines and methods for reducing or eliminating HIV from the body, the scientific community is more hopeful than ever that eradicating the virus is possible. (For more information on progress toward a cure for HIV, please see the related AIDS Beacon series.)

“I am hoping both [a vaccine and a cure] will happen during my lifetime so people do not continue to have to suffer through a lifetime of dealing with medications, side effects, stigma, and the financial burden of living with HIV and AIDS,” said Garner, who has been living with HIV for 29 years.

Aside from the scientific aspects, progress in eliminating HIV also requires focusing on difficult social and financial issues, such as how to bring expensive antiretroviral medications to those who need them but often cannot afford them. Worldwide, researchers estimate that only a third of people who need treatment for HIV receive it, and in the U.S. there are currently over 8,000 people on waiting lists for antiretrovirals, a record high.

In Garner’s home state of Florida, the legislature is considering tightening eligibility requirements for its AIDS Drug Assistance Program (ADAP), which provides free antiretrovirals to low-income people with AIDS. Garner, who has battled for more funding for ADAPs and other programs to help those with HIV via his Dab the AIDS Bear Project, expressed disappointment in the prospect.

“I hope there will continue to be access to life-saving anti-HIV medications and other services for Americans living with HIV and AIDS until a cure is found. No one should have to die from HIV and AIDS because they cannot afford treatment,” he said.

Dr. Margolis agreed that battling HIV in the future would require both scientific progress and tackling difficult social issues.

“All the things that are tied up in HIV infection – poverty, drug abuse, mental health issues, societal power issues – fixing them will help deal with HIV, and addressing them will make the world a better place too, at the same time,” he said.

Remembering Those Who Have Been Lost

As the 30th anniversary draws near, both Garner and Dr. Margolis said the date reminds them of the people they have known – patients, friends, and family members – who have been lost to HIV over the years. In the U.S., the CDC estimates that more than half a million people have died of AIDS.

“At the end of [the movie] ‘Longtime Companion’, there is a scene on the beach after a cure is found and everyone you knew who died from AIDS comes back to meet on the beach to celebrate a cure being found for HIV,” said Garner. The film, released in 1990, was one of the first to touch on the AIDS epidemic.

“Since I have known over 10,000 men, women, and children who have lost their battle with AIDS, including three partners and my god-daughter, it will have to be a very large beach. But what a sight for sore eyes they would all be,” he added.

Dr. Margolis agreed. “That’s a terrible thing that hopefully other people won’t have to experience, but still in most parts of the world, many people are still experiencing,” he said.

Garner said he hopes that the anniversary will renew the focus on HIV and AIDS in the U.S., both in terms of education and prevention, and for those who are struggling financially to get the medications they need.

But most of all, he hoped that those who lost their battle with the disease will not be forgotten. “I hope on this 30th anniversary we remember all those who have lost their battle with AIDS, not only in our country, but around the world. It seems all too often we have forgotten those who sacrificed and are no longer with us.”

For more information on the 30th anniversary of HIV in the U.S., including timelines, events, and the history of AIDS in the U.S., please see the AIDS.gov website.

Hope you enjoyed the slide show and the story from the Body. You can see the story on the Body at: http://www.aidsbeacon.com/news/2011/06/03/30-years-of-hiv-aids-a-lot-of-progress-but-still-a-long-way-to-go/

I have one request of all my readers. Get up, call someone you know living with HIV, tell them you love them, take them out for a meal or something else special. You never know when you might not get another chance to do so for your friend or loved one.

Until we meet again; here's wishing you health, hope, happiness and just enough.

big bear hug,

Daddy Dab