Petrelis Files

4,000 Ryan White CARE Act PWA Gap Between SF Chron, SF AIDS Fdtn

When I see such a wide discrepancy of numbers about how many people with AIDS in San Francisco access and use HIV services funded by the federal Ryan White CARE Act, I truly wonder if San Francisco is really not a resource-rich city in a developed nation, but instead a sub-Saharan African with no way of accurately determining the number of AIDS patients.

A recent news release from the SF AIDS Foundation claimed 11,000 PWAs are dependent on services funded by the CARE Act:

An estimated 11,000 San Franciscans rely on CARE funding for their care and treatment.

And here we have the San Francisco Chronicle claiming 15,000 PWAs are dependent on CARE services:

The city Department of Public Health says such cuts would devastate programs for most of the city's 15,000 HIV-positive residents who are helped under the federal plan.

Now I could understand and accept if the discrepancy between the Chronicle and foundation stats was 40 or perhaps even 400 PWAs, but a difference of 4,000 raises an alarming red flag. You see, for years San Francisco has had the REGGIE system, which is the health department's tracking system for PWAs using CARE services. This is how the health officials describe REGGIE:

[It] is the centralized client intake and registration system. It helps clients register for services throughout the system of care [...] REGGIE is also a client-level data system, providing information about client demographics, health status, service use, and needs. Client level data is required by HRSA as a condition of funding with several different reports [...] Reggie data is also useful for planning and needs assessment activities.

As someone who accesses CARE programs, I know first-hand how much information REGGIE requires from me, and that I am often required to update lots of things related to my latest bloodwork, evolving HIV drug cocktail and housing situation.

REGGIE is supposed to give the health department, AIDS agencies, doctors and nurses, and politicians in Washington who control the federal purse strings, current and highly accurate data on not only actual hard numbers of PWAs using CARE services, but also how those services are influencing t-cell counts, viral loads and over all health status.

So how is it the Chronicle and the AIDS foundation have a huge gap between them about how many PWAs may be affected by new funding formulas being devised by Congress for the CARE Act? The probable answer from the health department would be to give them a federal grant for a study and they'll get back to us in a year.

Whatever HIV or AIDS statistic from San Francisco is being cited by the health department or a service provider, related to the CARE Act and how much money this city should receive, I can't stress enough to Congress members to be skeptical of the statistic, insist on independently verified hard numbers and don't immediately accept any Chicken Little "sky is falling" alarms.

Last, and certainly not the least of my points is, regardless of whether the number of PWAs using CARE Act programs here is 11,000 or 15,000, neither the Chronicle's story nor the AIDS foundation's release quote a single person with AIDS who uses those programs. Um, can't the newspaper or foundation find PWAs willing to speak on the record about the battles in Congress over reauthorizing the CARE Act? Seems to me PWAs and our voices are the most important ones in this debate, but finding one who's quoted in recent Chronicle stories or releases from the health department and AIDS groups is like locating weapons of mass destruction in Iraq.

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The late Ryan White, a true hero and very brave young man who fought against ignorance and demanded, in his own sweet way, acceptance, education and love: