As the health care reform debate continues, TAG line’s Tracy Swan spoke with James Braun, doctor of osteopathy, a pioneering HIV physician, about how the epidemic has changed, and how our health care system can begin to meet the needs of an expanding and aging HIV-positive population.
By Tracy Swan
Dr. James Braun started caring for HIV-positive patients in 1982, and still sees patients three days a week at New York City’s Callen-Lorde Community Health Center. He is the founding director of the Physicians’ Research Network (PRN), a nonprofit organization providing peer support and education to physicians, nurse practitioners, and physician assistants who care for people living with, and at risk for, HIV disease and/or viral hepatitis (http://www.prn.org/).
Tracy Swan: This coming year marks the 20th anniversary of PRN. How did it start?
James Braun: In the 1980s the [HIV] epidemic was just brutal: clinicians who chose to treat HIV/AIDS and its complications in the early years were burning out from the amount of work and anxiety. Each day was unpredictable, with the surreal cascade of ever-increasing complications of AIDS; the uncertainty that surrounded day-to-day care of patients and the people who loved them; and, of course, the mourning. Despite all our efforts, so many people died, and that made it very difficult to feel good about our work.
To cope with all this, a few clinicians began meeting informally in each other’s homes for mutual support. There was also a social group for gay and lesbian physicians called New York Physicians for Human Rights [NYPHR] that tried to address HIV/AIDS clinical issues at some of its meetings. And though many of the people involved in the more informal meetings were also members of NYPHR, our straight colleagues were not. So the board of NYPHR—I was vice president at the time—decided to support the creation of a new group focusing on HIV/AIDS for all interested clinicians, and it was from this that PRN was eventually born.
In 1990, PRN began as a citywide organization that clinicians managing the care or complications of AIDS could join for peer support and education, and we have been meeting monthly ever since. We were able to create common ground for people all over the city who were interested in HIV, spotlighting advances in research and clinical management. We started publishing the PRN Notebook in 1995, and launched our website in 1998. PRN membership grew steadily; by 2000 we had over 600 clinician members in and around NYC, who in turn cared for over 70,000 people living with HIV and AIDS. These days, PRN meetings focus mainly on preventing and managing complications of chronic infection and lifelong drug therapy, diagnosing, treating and preventing coinfections and comorbidities, and the challenges of aging with HIV disease.
TS: What is important for us to remember about HIV?
JB: HIV is unique, and has been since the early days of the epidemic. First, it was unexpected, and its cause and treatment controversial. This should always serve as a vivid reminder that infectious disease is never static, and is likely to continue to surprise us again in the future. Several elements contributed to the rapid evolution of successful HIV treatment. It would not have been possible without a strong advocacy movement, largely driven by well-educated, insured people who were unafraid to make demands on their doctors, hospitals, insurance companies, and government. The gay community as a whole stood behind the struggle for HIV research, access to care, and fighting the unreasonable fears and stigma associated with AIDS. The government and the pharmaceutical industry conducted studies to find drugs to treat HIV disease, and the advocacy movement pressed for expanded access. People with HIV were willing to take risks to survive. There was a sense of urgency that could not be dismissed.
Before combination therapy, our patients seemed to grow old before our eyes. Young people who were dying of AIDS looked far older than they were, and they became increasingly disabled and often became home-bound in the final stages. So to be able to say HIV and “aging” in the same sentence is a beautiful thing. With combination therapy, we saw survival and wellness: people were able to go back to work, and focus their energy on things that were important to them.
In New York, many HIV patients are in the performing arts; actors could return to work, and writers could begin writing again. It was wonderful. Before 1996, HIV disease and progression to AIDS were so debilitating that it was impossible for people to be productive. Working people had to go on disability and spend down their assets so that they could qualify for Medicaid. Now people with HIV are offered treatment earlier, and rarely have complications that prevent them from realizing their goals in life, although they still have to deal with a chronic disease.
Much of this history has been forgotten; young people today don’t know the horror that we went through in the early days of the epidemic—they aren’t losing people they love, and they don’t see this happening all around them. As HIV has become what many wish to consider a chronic manageable disease, the urgency we all felt has subsided. But that is a false sense of security. We need to continue demanding ongoing research, so long as drug resistance continues to evolve. We need to revive some kind of vital advocacy base—if patients are not demanding new and better drugs, research is far less likely to happen.
We need sustained patient advocacy, clinical dedication, organized clinical research, drug research adn development, improved diagnostics, better prevention strategies— and, of course, easier access to care.
TS: We now have more effective, safer HIV drugs. So, without a randomized controlled trial, but in the context of other research and your experience, when should people start HIV treatment?
JB: We have lost the sense of urgency for treatment. In earlier days, once HIV disease progression was better understood and we had laboratory tools necessary to measure the level of HIV, it was considered unethical not to offer treatment to anyone with a detectable viral load and treatment guidelines were very aggressive. Then the fear of long-term toxicity from HIV treatment took rein; this led to a very conservative retreat. Guidelines changed, and recommended delaying treatment until there was clear evidence of immune deterioration. In recent years there has been a gradual endorsement of earlier treatment.
The NA-ACCORD (North American AIDS Cohort Collaboration on Research and Design) data, which looks at several large cohorts from 1996 onward, are extremely important in that they point to the survival benefit of starting combination treatment early. Survival was better in people who started therapy with a CD4 cell count of 350 cells per cubic millimeter or more, than in people who started with lower counts. And a more recent analysis shows that starting before the CD4 cell count drops below 500 provides an even greater survival benefit. You really can’t beat survival as the most desirable outcome in this disease—or any other, for that matter. And remarkably, this survival benefit was seen in people who took many of the drugs we have worried about the most.
Now that we have drugs that are safer and easier to take over the long term, we need to get back to treating HIV disease, not waiting until people get an AIDS diagnosis or are moving irrevocably in that direction. We know that therapy stops and even reverses HIV disease progression, and even if a “cure” is not yet possible, we may be missing the best opportunity for providing responsible care to our patients. So why wait? By starting therapy earlier, we may be able to preserve subtle immune function that affects long-term survival, but we will also be able to decrease risk of transmission, which could help end this dreadful epidemic.
TS: In New York, at least a third of HIV diagnoses are in people who have already developed AIDS. How can we get people diagnosed and into care sooner?
JB: I worry about the capacity of our system to provide HIV care and treatment as all the undiagnosed people out there gain access to medical care through health care reform. Even in New York, where we have the heaviest burden of HIV in the U.S., physicians are not required to have HIV-specific knowledge for licensure.
We are going to have to normalize basics of HIV management by including HIV disease in the curriculum of every medical school, and virtually every residency program, because there is hardly any medical subspecialty that does not or will not see complications associated with HIV disease.
Every practicing primary care doctor needs to know basic components of HIV medicine, because clinicians will not run diagnostic tests unless they know what to do if the result comes back positive. How many times must people with undiagnosed HIV disease seek medical care for one problem or another without being appropriately tested? How far does their disease have to progress until their diagnosis becomes obvious? If health care reform succeeds, we are unlikely to have an efficient response to the multitude of previously uninsured and undiagnosed HIV-positive patients until all primary care clinicians—and by that I mean any clinicians that see patients in a first-pointof- care setting—understand the diverse signs, symptoms, and associated conditions of HIV disease and how to diagnose both acute and chronic HIV disease. They also need to understand the limits of what they can appropriately manage, and develop good working relationships with different subspecialists so that they can appropriately refer their patients when necessary.
TS: How can we improve HIV care and treatment?
JB: Once people are diagnosed with HIV, they will need guaranteed ongoing access to health care, and by that I mean continuity of care for the rest of their lives. The optimal treatment of HIV disease does not include treatment interruption. But health care delivery in this country is so chaotic and fragmented that it is almost impossible for people to maintain continuity of care— employers change insurance policies, people move, they may lose jobs and insurance, some are in and out of prison, and the list goes on and on. Continuity of care is crucial, because interrupting HIV treatment can accelerate HIV progression, result in greater likelihood of complications, and increase the risk of HIV transmission. Access to health care and long-term adherence to treatment allow people to realize the full survival benefit of long-term viral suppression. With treatment secure and in place, people can get on with the rest of their lives.
TS: As health care reform looms, how should we think about changing our health care system so it is ready for an aging HIVpositive population?
JB: Clinicians who do not have extensive training in general medicine will need additional training to deal with the complications that their HIV patients will undoubtedly face as they age. Just think for a moment how few geriatricians we have in this country. And now tack on HIV disease.
Patients with HIV disease will be facing problems with health care delivery as they age, since it is rare for a single doctor to oversee medications, and help people coordinate and make sense of their total health care. There is little emphasis on the value of good primary care services, and primary care providers are not adequately compensated or respected for much of the work they do. Many patients themselves don’t understand the value of having one primary health care provider as an advocate and partner in their long-term health care.
We need to emphasize the critical inportance of qualified, accessible, and reliable primary care providers in health care reform. Everybody needs one that they can trust, whether they have HIV disease or not.