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Massachusetts HIV Bill Must Pass by July 31

By Ed Perlmutter

July 29, 2010

The Massachusetts State Senate is currently considering a bill that will finally bring Massachusetts law in line with the widely-adopted CDC guidelines recommending routine "opt-out" HIV screening. The bill is being supported by a broad coalition of community health centers, prominent HIV physicians, patients, public health officials, and many others. However, because the legislative session ends on Saturday, July 31, this bill must either pass within the next 72 hours, or die on the Senate floor.

As an individual who was diagnosed late with HIV, I have a personal interest in Senate Bill 2416, and I testified in favor of this legislation last October. Despite numerous clinical visits over two years during which I could -- and should -- have been tested, I was not. If routine opt-out testing had been available in Massachusetts four years ago, it would have allowed me to know my status sooner and begin treatment earlier.

Unfortunately, not everyone agrees. Opponents claim that falling number of new HIV diagnoses in Massachusetts between 1999 and 2007 supports maintaining the status quo of opt-in HIV testing. This argument simply ignores the hard facts:

  • There are still an estimated 5,000 undiagnosed individuals in Massachusetts, living with HIV without even knowing they have it.
  • 31 percent of HIV diagnoses in Massachusetts are late-stage diagnoses -- meaning that we're still not identifying the disease fast enough.

The battle over SB 2416 is starting to receive attention beyond Massachusetts. Over the past few weeks, both The Huffington Post and The Boston Globe have published articles and editorials in support. More national attention needs to be put on the backwards activism that is taking place in Massachusetts.

As long as there are still thousands of undiagnosed and late-diagnosed individuals in Massachusetts, maintaining the status quo just isn't good enough.

Ed Perlmutter was diagnosed with HIV in July 2006, and has been receiving HIV therapy through a National Institutes of Health (NIH) study since September 2006. He is a manufacturing manager at Pearson Learning Solutions in Boston.

Read Perlmutter's entire testimony here.

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See Also
Quiz: Are You at Risk for HIV?
10 Common Fears About HIV Transmission
More Viewpoints on U.S. HIV Testing Policy

Reader Comments:

Comment by: Calix Ramos DMD Fri., Jul. 30, 2010 at 2:31 pm UTC
I appreciate both of these heartfelt accounts of missed opportunities to diagnose a potentially fatal, communicable but treatable disease. As a dentist with 15 years of experience working in high prevalence communities, I have tried to incorporate routine screening into dental practices. Given the ease of use of oral rapid tests, dental practices would seem a natural place for testing. In addition, the dentists that I work with are eager to be part of a public health solution that benefits patients and communities alike. And yet, incorporating testing into the dental setting has been an uphill battle. Exceptional requirements for the documenting of informed consent mitigate against making HIV testing in any way routine. Exceptional documentation requirements simply result in a continued segregation of HIV testing. Those who suggest otherwise, I suspect, have little experience in health care settings. I continually witness the sapped enthusiasm of the most dedicated providers when faced with exceptional procedures that interfere with the routine delivery of care. The results are continued missed opportunities, late diagnoses and unnecessary new infections. The solution is aligning consent procedures for HIV testing with those of other health screenings. Opt out consent for HIV testing is long overdue and urgently needed.
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Comment by: Kali Lindsey (New York, NY) Thu., Jul. 29, 2010 at 11:21 pm UTC
Change is difficult. If nothing else, we've recently learned that strong feelings must be reconciled for change to occur. We call this cognitive dissonance in psychology. With this view, we require extremely compelling evidence to motivate us to consider another alternative.

In the case of opt-out routine HIV screening, the evidence is clear. Presently in the United States, close to half of people that are newly diagnosed with HIV, will be diagnosed with AIDS within a year. Approximately 5% of those diagnosed with HIV will die within a month. Each year, more than 56,000 individuals are infected with HIV, more than half of these infections occur as a result of some one who is unaware that they have the virus.

I have been living with AIDS since 2003, but I was lucky! In spite of the repeated visits that I made to my health care provider and showing up in an emergency room department with an infection that is primarily seen in older adults and people with compromised immune systems, I was never offered and HIV test. I was 23. A week later, I would return to the emergency room, practically lifeless, this time with viral meningitis, pain throughout the left side of my body and a persistent 104 degree temperature. Two weeks later, I was informed that I was living with AIDS.

Far too often, people living with HIV are not offered an HIV test due to short-sighted subjective misinterpretation of risk. This has consequences, both for those of us at-risk and the communities in which we live.

I am not lucky because I have AIDS, the day I found out was the worst day of my life. I am lucky because I regained my health, I have access to high-quality health care and treatment, and I have a wonderful family that supports me each day to advocate for others who have the right to know.

I celebrate the opportunity that I've been given to live my best and most healthy life as well as protect those that I love and care about. All of us should be so lucky!
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