Start Where You Are, Use What You Have, Do What You Can*
By Ed Perlmutter
September 10, 2012
*Thanks, Arthur Ashe.
On April 27, 2012, with the stroke of a pen and little fanfare or media attention, Massachusetts Governor Deval Patrick signed into law Senate Bill 2158 ("An Act Increasing Screening for HIV"), thus removing a decades-old requirement to obtain written informed consent prior to HIV testing. The Commonwealth's new law now allows for an individual to give verbal informed consent before receiving an HIV test. Until the law took effect on July 26, 2012 (again with little fanfare or media note), Massachusetts was one of only two states that had mandated written consent, a testing model which many clinicians and testing advocates, myself included, believed posed a barrier to testing.
In contract, on June 27, 2012, Delaware Governor John Markell signed into law a routine opt-out HIV testing law, following unanimous votes in both the House and Senate. Previously, Delaware required specific informed consent before an HIV test could be given. The new law states that general consent to medical care shall encompass consent to an HIV test unless the test is declined. By actually making an HIV test part of routine health care, the state of Delaware has chosen to implement in its purest sense the September 2006 Centers for Disease Control and Prevention (CDC) recommendations for increased HIV testing.
The Massachusetts law, on the other hand, does not implement the CDC recommendations for increasing HIV testing whereby everyone between the ages of 13 and 64 would be tested at least once. I continue to believe that HIV testing should be as routine as cholesterol testing and offered in a similar manner. No cherry picking. And it's possible that until Massachusetts moves to a routine opt-out testing model, like Delaware's, there could be thousands of individuals infected with the HIV virus who remain unaware of their status simply because their clinician has not offered them an HIV test.
At least now the AIDS service organizations here in Massachusetts are talking about how the only way to end the epidemic is to increase testing so that people become aware of their HIV status. Seems it was only a few months ago -- in fact it was -- that they were offering interpretations of HIV incidence data to espouse that HIV prevention methods were working quite brilliantly here. The sad reality is that there are thousands -- five or six thousand, perhaps many more -- Massachusetts citizens who are infected with the virus but do not know it and therefore they cannot begin treatment; they continue to unwittingly spread HIV to others. And the wheels of infection spin round and round.
A CDC statistic that continues to startle me, and should give you pause too: one in five people with HIV are unaware they have the virus. At last month's International AIDS Conference 2012, organizers and participants alike called for significant increases in HIV testing and treatment, very good news indeed. And it was reported this month that the U.S. Preventive Services Task Force is expected to recommend routine HIV testing by year's end, a notable update to their 2005 stance that left the decision for an HIV test up to a physician. Under the Affordable Care Act of 2010, insurers are required to cover preventive services that are recommended by this task force. Such a recommendation and implementation would fundamentally alter how and when HIV is detected and thereby treated.
Thankfully, testing and treatment are now becoming the central AIDS prevention strategy in the United States, providing a critical tool beyond condoms, behavior change, clean hypodermic needles and a safe blood supply. And while testing here in Massachusetts has taken baby steps toward a fully routine approach, in two months you'll be able to purchase an over-the-counter at-home rapid HIV test at the local pharmacy.
There is a point to the following anecdote, so please hang with me. Two years ago I had my gallbladder removed at the Boston hospital that was recently named the "best" in the nation by a prominent news magazine. While I received no written or verbal post-surgery wound care instructions -- zero, zilch I did receive samples of Lorna Doone cookies in the recovery room, and less than four hours after coming out of surgery and general anesthesia I was wheeled out to the hospital driveway at a speed that clearly exceeded the wheelchair speed limit. Next!
The following morning icky glop started oozing out of the bandage covering my belly button. So I rang the surgeon on call and asked what to do. The surgeon kept insisting that I was provided with post-surgical instructions. She refused to believe such was not the case (my partner = my witness) and rather than taking a trip to the Emergency Room, a physician friend came by and attended to my bandages and to my angst.
At my post-op appointment a few weeks later, I told Dr. B the surgeon that I feared for the future of surgical medicine, when docs like him may not have time for gallbladder-removal peeps like me. And crazy-assed as it may seem, I don't think my future shock scenario is outside the realm of possibility: "Mr. P, we're just too darned busy this month. Here's a prescription; go to your local pharmacy and pick up the deluxe Gallbladder Removal Kit. Better get two just in case you mess up. And here's a link to the YouTube video. Just follow the simple steps in the video, and you'll be fine." I told Dr. B that I hope I am dead and gone when my future shock vision becomes reality. He told me he hopes I never have to have surgery again.
This a somewhat roundabout way to explain why I believe HIV testing should not occur in the privacy of one's own home but rather in a routine manner in a clinical setting. And as much as I sometimes question the quality assurance techniques of some medical professionals, I have no interest in yanking my own gallbladder, and if I didn't already know I had the virus, I'd have no interest in giving myself a home HIV test to find out that truth. At-home HIV testing is nothing like an at-home pregnancy test, and an HIV diagnosis is nothing like finding out you are pregnant. And while I fear an overtaxed and overcrowded health care system, I am also no fan of Do-It-Yourself Medicine.
Sure, OraSure (the developer of the at-home HIV test) is being required by the Food and Drug Administration (FDA) to run a 24/7 bilingual call center to answer questions about HIV/AIDS and refer consumers to care. That's all well and good but then what? Does the person who just tested positive at home wallow in fear, isolation and shame? And freeze? Or do they face their fears and visit a clinic for a follow-up test and HIV treatment counseling? I question whether an 800 number can fulfill the human role of interacting with health care professionals. Continuity of care is crucial in getting the recently diagnosed on the proper path to HIV wellness, and availability of clinicians, case managers, and treatment options may be more than a bit convoluted to arrange from the 800 call center operator and various websites. And like with many products and services, just because something is available in the free market does not mean it should be purchased or used. There are no easy answers to the difficult public and personal health questions raised by the advent of at-home HIV testing -- much will be revealed once the product comes to a pharmacy near you in October.
* * *
If nothing else, an extended period of unemployment this year afforded me time to reflect on how I wish to spend the remaining years of my professional career. I felt the only practical path to real change was to return to school and pursue an advanced degree. And lo and behold, on September 5 I became a fulltime student in a graduate program in Health Communication at Emerson College here in Boston.
I consider taking the plunge into this Master's of Arts program as part of an unexpected progression since my HIV diagnosis in 2006. My decision to return to school, much like my decision to become an HIV testing advocate, has neither come lightly nor emerged from a vacuum. It could be said I never planned this particular academic or career path. In fact, I spent the first few years following my July 2006 diagnosis taking care of my health -- learning about the virus, entering a long-term National Institutes of Health (NIH) HIV drug study, immersing myself in counseling and support groups, and becoming involved in local HIV/AIDS service organizations. Following my 2009 testimony at the Massachusetts State House in favor of a routine opt-out HIV testing bill, I made a conscious and informed decision to become an HIV testing advocate. That decision -- first to testify and then to become a policy advocate -- involved soul-searching and introspection and raised the specter of bringing a deeply personal and private health matter into the public arena. Until that time, disclosing my HIV status had always been a carefully-weighted decision. I learned early on that once I disclose, I can never untell my status.
I am uncertain if a few years from now I'll be working in the HIV/AIDS area of health communication, but I'm certainly leaning in that direction. This master's program will enable me to develop an evolving passion for communicating health-related issues clearly, cogently, and intelligently, and in the longer term will allow me to advance and advocate health care policies that benefit specific and often underserved constituencies. Becoming a fulltime student at the age of 50, after 29 years away from academia, is daunting to say the least but I remain confident that my sense of purpose and my desire to gain relevant new skills will afford the necessary focus and energy so that I can successfully complete the program and move forward into a new and rewarding career.
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An Accidental Activist
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 lives with his partner in an old farmhouse on the city limits of Boston, in the woods, amongst critters and varmints and dozens of varieties of dahlias. When he is not raising awareness as an accidental activist, he is a graduate student in health communication at Emerson College and works as a textbook publishing consultant.
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December 7, 2015 - Giving Back Through Research: A Blog Entry by Ed Perlmutter
April 12, 2013 - My Shifting Seat on the HIV Merry-Go-Round: A Blog Entry by Ed Perlmutter
September 10, 2012 - Start Where You Are, Use What You Have, Do What You Can: A Blog Entry by Ed Perlmutter
April 5, 2012 - Simmer on Low; Stir Occasionally: A Blog Entry by Ed Perlmutter
December 2, 2011 - Massachusetts HIV Testing Policy in 2012: Six Degrees of C. Everett Koop -- A Blog Entry by Ed Perlmutter
Ed's Posts on TheBody.com's Positive Policy Blog:
August 18, 2010 - Massachusetts "Opt-Out" HIV Testing Bill: Update
July 29, 2010 - Massachusetts HIV Bill Must Pass by July 31
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