AIDS treatment goes global: the primary focus has shifted "from end-of-life hospice care to outpatient clinical care, as HIV-positive patients on new drug regimes [sustain] longer, healthier lives."

Ged Kenslea

ALMOST 20 YEARS AGO, a small group of friends, outraged over seeing peers with AIDS dying in the streets of Los Angeles, banded together to "fight for the living and care for the dying." With a coffee can and a clipboard, this group, led by New York native Michael Weinstein, raised awareness and funds door to door to press for legislation that ultimately allowed them to open the first licensed AIDS hospice in California. Since that time, the fledgling group has grown to become AIDS Healthcare Foundation (AHF), the largest ADS organization in the U.S., operating free treatment clinics in this country as well as Africa, Central America, and Asia, serving close to 30,000 patients worldwide. The group also has continued--and expanded--its tradition of outspoken advocacy through protests, patient marches, lawsuits, and lobbying for legislation, all on behalf of those who are living with HIV/AIDS.

As the Foundation grew and evolved in response to the exploding epidemic, Weinstein never lost sight of the co-founders' original pledge. As president, he oversaw that historic opening of the Chris Brownlie Hospice, named in honor of co-founder and close friend, Chris Brownlie, a Los Angeles writer. Brownlie, who was living with--and dying from--AIDS, first inspired Weinstein and friends to act after he spent days on a stretcher in the halls of a Los Angeles hospital awaiting admission. At the time (1988), in addition to widespread misunderstanding and fear of the disease, few hospitals were equipped to care for AIDS patients, and no effective medical treatment was available.

"We provided compassionate end-of-life care to nearly 2,000 patients at this first hospice," recalls Weinstein. "Chris himself lived his last days here. We, his friends, find comfort in the care we provided to so many in the facility that bore his name."

Brownlie often wrote of his straggles with AIDS, chronicling the physical and emotional toll of the disease that ultimately claimed his life in November 1989. In his poem, "AIDS," he captured a sentiment that still resonates today, " ... It is surviving and believing in the future."

"All of us at AHF continue to honor Chris" memory and his belief in the future in the work that we do every day bringing life-saving treatment to people living with HIV/AIDS worldwide," concurs Weinstein.

Today, AHF is a 24/7 operation, offering HIV prevention and testing services, as well as medical care and life-saving drug treatments in more than 30 clinics on four continents. With the arrival of effective treatment in the form of anti-retroviral therapy--the so-called AIDS drug cocktails in 1996--HIV/AIDS, at least in the developed world, has become a chronic, manageable disease. In response, Weinstein and AHF shifted the primary locus of the organization from end-of-life hospice care to outpatient clinical care, as HIV-positive individuals on the new drug regimens began leading longer, healthier lives.

With Federal backing, it also created Positive Healthcare, California and the nation's first managed care plan designed specifically for people with AIDS. Besides improving the health outcomes of its clients, the program has generated significant cost savings for California. The initiative later served as an example to Florida officials, who engaged AHF to bring an effective disease management program, Positive Healthcare/Florida, to that state's Medicaid population living with HIV/AIDS, showing that quality care and cost containment can coexist and, indeed, thrive.

After groundbreaking advancements in AIDS treatment in the mid 1990s. AHF's advocacy efforts turned toward ensuring access to these new life-saving drugs. This was reflected in a shift in the organization's mission, which became a commitment to provide, "cutting-edge medicine and advocacy regardless of ability to pay."

As the epidemic grew in the developing world. AIDS Healthcare Foundation has moved with it. It is estimated that 40,000,000 people are living with HIV/AIDS worldwide. Since 95% of those stricken reside in low- and middle-income countries, only five percent of those infected have access to life-saving treatment.

Sub-Saharan Africa has been hardest hit by the devastation of the pandemic. In 2001, AHF went global, opening its first free AIDS treatment clinic outside the U.S. The Ithembalabantu Clinic (Zulu for "People's Hope") in Durban, South Africa, now serves more than 3,500 patients and has become a touchstone and model as AHF has expanded its reach to other nations in need. Today. AHF has numerous global clinics and partnerships throughout Africa--including in Uganda, Zambia and, soon, Rwanda and Swaziland--in addition to sites in Honduras, Mexico, India, China, and Ukraine.

"When we first opened clinics in Africa, it seemed a faint hope that treatment would be available to the many, not just the few, as the prevailing wisdom was that the obstacles were simply too great," notes Weinstein. "AHF set out to prove that theory wrong by bringing out successful model of care and sharing our expertise by providing lifesaving treatment to those in need in developing nations as we did in the U.S."

For instance, AHF has been a vital part of Uganda's success story in the fight against AIDS, as the country dramatically reduced its HIV rate from one of the continent's highest to one of the lowest, thanks, in part, to Uganda Cares, a partnership between AHF and the Ugandan Ministry of Health. Launched in 2001, it now serves close to 5,000 Ugandans who receive vital treatment at 11 AHF clinics throughout the country, including a pioneering facility in Kampala, the capital city, at the St. Balikuddembe Market, the largest marketplace in East Africa. Over the next year, the partnership plans to open 10 additional clinic sites in and around the capital.

Grace Akampumuza, 39, is one of Uganda's success stories. After her husband, two of her brothers, and many other close relatives died of AIDS, her own health began to fail in 2001. Left with three young HIV-negative children, she mustered the courage to get an HIV test, which confirmed what she had presumed: she was HIV positive. With few resources to pay for medicines at a private clinic, Akampumuza received little or no care and, at one point, fell into a coma.

"I heard about AIDS Healthcare Foundation, that this organization was giving free ARVs in Masaka," reveals a grateful Akampumuza, who began receiving care and antiretroviral treatment at AHF's clinic two hours southwest of Kampala. "Since that time, my life has changed. Treatment has saved my life. I am happy to see my children grow, because when I was going to die, my children were still very young."

With Africa's incredibly high rate of HIV infection, AHF saw firsthand the enormous need for trained medical staff, and responded with a creative solution by rolling out its HIV Medics program in 2004, which trains non-medical personnel to assist doctors and nurses in providing treatment. Lay people are taught in a 12-week intensive course to become helpers--taking medical histories, performing limited physical examinations, and dispensing medications under the supervision of a physician or nurse. The program has helped resource-constrained countries provide care to many more patients at a significantly lower cost.

Akampumuza herself became part of the expanding global mission when she trained as an HIV medic and joined Uganda Cares' staff. At one point, her weight had dropped to 92 pounds and her CD4--or T-cell count, an indicator of the immune system's ability to fight infection--had fallen to just 45. Akampumuza remarks, "After receiving treatment, my CD4 has risen to 486 and my weight is [165 lbs.]. I was an accountant, but ... thanks to AIDS Healthcare Foundation, I joined the medical profession. I am now an HIV medic and a trainer. Can you believe that?"

"Though there is a great deal to be encouraged about in the global fight against AIDS, it is still a fight we are losing," Weinstein stated when honored in November of 2005 by Keep A Child Alive, a New York AIDS organization focused on treatment of children and families in Africa. "AHF has 8,400 clients in treatment today in the developing world--that is about the same number of people who die of AIDS in the world every single day. We have the technical knowledge to stop AIDS; the only question is whether we have the will.... "

Back in his office at AHF's administrative headquarters in Los Angeles, Weinstein, reflecting on both the history' of the epidemic and AHF, comments, "For those of us involved in the global battle against AIDS. we do not look at it as a burden but as a magnificent adventure. Is there any greater gift than having the opportunity to save a life?"

As he speaks, a painting of friend and AHF co-founder Chris Brownlie hangs on the wall behind him, an ever-present reminder of the commitment made by those first friends in those bleak early days when caring for the dying was all they could do. Weinstein marvels at the progress made since his cohort's passing, but notes that millions continue to lack access to life-saving treatment. While Weinstein concedes the challenges facing those in the global fight against AIDS, he cannot help but invoke anthropologist Margaret Mead's famous observation, "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has."

Ged Kenslea is communications director and Lori Yeghiayan a communications specialist for AIDS Healthcare Foundation, Los Angeles, Calif.

COPYRIGHT 2006 Society for the Advancement of Education
COPYRIGHT 2008 Gale, Cengage Learning