Resetting the Standard
King says meds aren’t magic, but we could be getting more out of HIV treatment
As a person living with HIV, I know well that starting treatment for HIV is ultimately a personal decision: Every infected person, upon diagnosis, should have the opportunity to discuss the pros and cons of treatment with his or her medical provider. Part of that discussion is, of course, when to start treatment, given those pros and cons and given the latest treatment information. It should always be the patient’s choice when to initiate treatment and what treatment to initiate under the direction of a medical provider.
I also acknowledge that much is not known about many treatments and that legitimate fears remain about drug resistance (although I believe these fears are less significant today because of the multiple combinations presently available and new therapies under development).
Despite these caveats, I believe it is time for the medical community and all levels of government to do more to exploit the benefits of early treatment of HIV, both as a means of keeping people healthy and of dramatically reducing the spread of the virus. Here in New York City and in other cities and areas, outdated definitions of HIV—and thus the standard of care used to treat it—mean that poor and chronically ill people are actually cut off from supportive services that are every bit as critical to their health as their meds.
Emphasizing access to treatment
More and more studies indicate that the delay of treatment until a person’s T-cell count falls below 500 is deleterious. Even above that number, HIV seems to have an impact on the immune system, encouraging the advancement of other diseases, including hepatitis C and various carcinomas. For that reason, I believe that many HIV positive people may choose and should have the right to choose to begin treatment as soon as they learn of their infection. (I know that there is disagreement among respected scientists about when HIV treatment should start—Housing Works absolutely opposes any standard of care that denies or compels treatment or that sets a one-size-fits-all protocol in regard to treatment. Undoubtedly, more research needs to be done about when treatment should begin so that doctors can give people living with the virus the best possible advice.)
Early HIV treatment has a significant impact not just on health but also prevention efforts. First, it is apparent that treatment dramatically lowers the amount of virus in a person’s body, thereby making the virus significantly more difficult to transmit. The more positive people who have access to treatment, the less the virus will likely be transmitted. Thus, simply making treatment more widely available will have a structural impact on the spread of HIV. People who find safer sex difficult or onerous to manage in monogamous or non-monogamous relationships should consider treatment both for their own health and as a means of protecting their sexual partners.
Timely implementation of post-exposure prophylaxis (PEP), whatever the nature of the exposure, also makes it far less likely that an exposed person would become infected. Thus post-exposure prophylaxis has been made increasingly available as a standard of care for both workplace exposure and rape. Housing Works believes that people who have engaged in high risk sexual behavior, whether coerced or not, should have ready and timely access to post-exposure prophylaxis in a non-judgmental way. PEP should always be accompanied by counseling and information that helps the individual make educated decisions both about treatment and about future risk behavior.
Let me be clear: I do not see the many benefits of HIV treatment as justification for coercive treatment. However, it is clear that those benefits need to be recognized and incorporated into our HIV health and prevention efforts.
Dangerous definition
Many U.S. cities and jurisdictions and programs to one degree or another tie HIV services to health status in relation to standards of care for treatment. For example, in New York State, “HIV Disease,” which was once terminology for purposes of Medicaid billing, became written into law as the threshold for New York State HIV-enhanced rental assistance and later, in New York City, for a wide range of services ranging from supportive housing to enhanced nutrition, transportation and other benefits. “HIV Disease,” which is defined by the New York State AIDS Institute, has historically been tied to the standard of care for treatment.
Housing Works has urged New York State that its standard of care recognize treatment upon diagnosis as a recommended treatment option. Housing Works has also urged that the definition of “HIV Disease” be changed to “HIV infection,” without a tie to T-cell counts. The reality is that for low-income people living with HIV, and particularly for people with multiple comorbidities such as homelessness, chronic chemical dependence and mental illness, basic supports such as housing, nutritional support and transportation assistance are essential for well-being whether or not they are on treatment.
If a person opts for treatment, such supports are vital for adherence. Perversely, if a New Yorker chooses treatment before reaching the current threshold of 350 T-cells or lower, that person may never achieve the threshold that would allow him or her to receive these supports. Thus, the system provides a disincentive for people who would like to enter into treatment before their T-cell count falls below 350.
There is strong evidence that housing and ancillary services are essential for both HIV prevention and maintenance of health whether or not a person is ready for treatment. So treatment definitions and services should ultimately be decoupled. But as long as they are coupled, it is imperative to recognize the changing recommendations regarding treatment.
HIV medications are not perfect and no one has a total understanding of their effects, especially because it can take years for problems to surface—that fact only underscores how important it is that people be informed about their treatment choices. However, it is clear that we are not taking full advantage of one of our best weapons to treat and end this epidemic. Housing Works will continue urging New York’s local and state governments to address this flaw in its AIDS services. I urge others in the AIDS community around the U.S. to do the same.
Posted on February 27, 2009 at 1:40 am
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