Joint Committee on Health Care

– Massachusetts General Court

Joseph Beckmann, 22 Stone Avenue, Somerville, MA 02143
Joe.beckmann@gmail.com
Members of the Committee, let me first outline three issues as I
see them, regarding health care disparities and HIV prevention and
treatment, and then suggest some options.
Most significant is a drop this year from over 800 recorded new
cases to something between 300 and 500 (the method of counting,
and now requiring names, makes these numbers soft, but substantially
lower in any case). That significance accrues between $60,000,000
and $100,000,000 benefit to any state (this one) with a universal
health care system, since the average case is between $200,000 and
$600,000 according to the Harvard AIDS institute. Notably
Commissioner Aurbach never mentioned this benefit in discussing the
Governor’s recent cut of $60,000,000. Nor did he describe how some of
that benefit could be invested in further reducing this and other
diseases, or why and how such benefits directly impact the long term
costs of a universal health care system. It has long been noted that
ONLY a universal system can capture these cash values, since,
otherwise, such benefits evaporate between various insurers and
coverage gaps.
Second, but of very high significance, is the result of the Post
Exposure Prophylaxis study at the Fenway Community Health Center,
and conclusive proof that HIV can be prevented even after initial
exposure if and when a Post Exposure Prophylaxis (PEP) regimen
begins within 72 hours. That data are on the state website, and in the
CDC and other literature, but nobody knows about it. The reason no
one knows is that DPH tested a public information campaign for a few
months after the Fenway's conclusions (themselves fifteen years after
the treatment was known and used for medical professionals), and,
with "only 80 or so users per month," the Department deemed
publicity not worth the expense of promotion. The treatment is still on
the website, and there is a list of over 20 centers where it is available
at no cost to the patient, but (a) many of those sites are not even
aware they have the capacity or responsibility or even of the treatment
itself, (b) there is no description of the treatment option in Spanish or
other languages, and (c) you've got to know where to look to find it on
the net – and “post-exposure prophylaxis” does not quite roll off the
tongue: it is hardly an obvious search, even with google. The length of
the address represents how deeply the site is buried in the state's site:
(http://www.hcfama.org/index.cfm?fuseaction=Page.viewPage&pageId
=1069&grandparentID=531&parentID=541)
Third, and of almost the same significance, is the clinical trial,
again at the Fenway, of Pre-Exposure Prophylaxis (PrEP). Since there is
no chemical or clinical difference between taking anti-viral medications
before or after exposure, this seems a slam-dunk clinical trial, notable
only in that the drug company has made these treatments for free as
long as clinical research is the outcome. While there may never be a
vaccine, there are – quite clearly and even more clearly in this state,
the only state who could financially benefit from deep reductions in the
prevalence of this very expensive disease – several different means to
cut the rate of the epidemic.
The most notable consequence of these innovations is that they
have been available for more than a decade, and, at case loads of
1500 to 800 per year, the Commonwealth has paid both a huge human
and extraordinary financial price for the discretion of the medical
community, rivaling that of the Big Dig. For most of this time the
medical profession chose to limit treatment to its own members –
medical professionals who may have encountered a needle stick or
other similar clinical exposure. That discretion cost thousands of
people dozens of years of healthy living, while it also costs the
Commonwealth an annual bill of several hundred million in treatment.
Anger, while appropriate, is probably not the most fruitful response.
A second quite notable consequence is that none of these
conditions have ever been rendered in Spanish, Portuguese, Creole, or
any of the other 46 languages in the Commonwealth; there has never
been any outreach to the most rapidly growing at-risk populations of
women, Latinos, elders and teens; and there continues to be a blanket
of discretion among most AIDS service providers and knowledgeable
public officials – including the Governor himself, in the course of his
campaign two years ago.
A third and very troubling consequence is that the mere
existence and availability of this treatment seriously affects criminal
prosecutions in this and other states of those who may carry the HIV
virus and, knowingly or innocently, infect others. Because there is a
treatment to prevent that infection, there is very good reason to
hold the infected party at least partially, and perhaps exclusively and
completely liable.
Your committee may want to explore and discuss these three
conditions and their three consequences. Who is to blame? Who is to
be rewarded? Who is now responsible and how can their fulfill their
medical and legal responsibility to using these resources to reduce
pain, illness, and - particularly in this financial climate - cost? The
Department’s initial attempt to publicize the treatment, and then its
withdrawal, would seem an appropriate investigation. They have
apparently abandoned this responsibility which, it would seem, now
falls to your Committee.
Thank you.