President Obama recently released a much-needed national HIV/AIDS strategy that aims to slash new infections by 25% in the next five years. This major domestic policy initiative will take aim at the elephant in the room: the American HIV/AIDS epidemic.
How did we ever miss this? Admirably, the focus of past years has been on fighting the global AIDS epidemic. How the disease has affected communities in the United States, however, has been a second-tier issue for U.S. policymakers -- even though 1.2 million people are living with HIV in the United States and new infections total more than 56,000 annually, according to the Centers for Disease Control (CDC). Perhaps even more shocking is that there are an estimated 230,000 people living with HIV in the U.S. who are not even aware of their infection and as a result, are more likely to transmit the virus to others.
Experts say that routine testing is an effective tool in our arsenal to fight domestic HIV/AIDS; to make testing of the disease as commonplace as screening for cholesterol. However, even though a majority of states allow for routine opt-out screening as recommended by the CDC, some states still prohibit it.
Right now, lawmakers in Massachusetts are contemplating a bill that would implement the CDC recommendations on testing. But it is being met with fierce opposition by some activists of yesterday who are ignoring the reality of the disease today. These advocates turn back the clock to the pre-AIDS era, perpetuating the disease's stigma and keeping the infected in the shadows in the process.
Today, Massachusetts law requires all patients to "opt-in" to HIV testing. Simply put, patients in Massachusetts are not routinely offered the test by their health care provider, but instead have to ask for it or are offered it if their provider feels they are at "high risk" for contracting the disease and then have to sign a special written consent form before being given the test.
Risk based testing is fundamentally stigmatizing. It requires doctors to profile patients, perceiving risk in some patients where there is none and failing to identify it in others. Not only is risk based testing profiling, but based on the surveillance results from the past 20 years, it is clearly not working and still missing 1 in 5 people living with the disease.
A recent study showed that this risk based approach resulted in less testing. When asked if they would like to take a test, people assumed that testing was unusual, that saying yes was essentially admitting to risky behavior. When asked in an opt-out way, more people tested because they assumed testing was the norm.
Strangely, forces opposed to the Massachusetts bill are pushing some of the most regressive public health policies in one of the country's most progressive states. These activists claim that opt-out testing would remove necessary privacy protections for HIV/AIDS patients.
In a stinging rebuke of these activists, a recent Boston Globe editorial said the current system was a barrier to people knowing their status. "A key indicator of the need for more testing in Massachusetts is that about one-third of those testing positive for HIV become sick with full-blown AIDS within two months," the piece noted.
The debate around testing is bigger than what is happening at the statehouse in Boston. Major metropolitan areas are still considered to be the "epicenters" of generalized epidemics. Shockingly, rates of infection in Washington, D.C., are comparable to those in sub-Saharan Africa. In areas of a generalized epidemic, opt-out screening is a proven method to find the undiagnosed. But we still have states like Massachusetts ignoring the CDC and still taking a stand against it. Why?
The resistance to sensible legislation like Massachusetts bill SB 2416 is part of the problem. HIV is not the same disease now that we were fighting nearly 30 years ago, but some of the activists have not changed with the disease. We need legislation across our country to fight the realities of the disease today. We need to arm our nurses and doctors with effective tools to test for HIV and fight the epidemic here in our country the same way we advocate for the fight abroad.
All patients, frontline providers, advocates and policymakers should want the same thing -- a reduction in the number of new infections and getting the undiagnosed into treatment. Opt-out testing is a known way to reach more people. President Obama has said, that we cannot make progress in stemming this tide until we get "expanded testing so people can learn their status."
It's good advice. Massachusetts should take it.
Follow Hilary Kramer on Twitter: www.twitter.com/@HilaryKramer
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The claims that the bill 'weakens privacy rights' and that patients 'would be forced to opt out of HIV testing' are simply incorrect. Disclosure of HIV test results remains strictly prohibited without written consent. And, just as they do now, patients have the right to refuse an HIV test once a doctor informs her/him that the test will be done.
The proposed change is far from radical: the CDC recommends exactly the procedure for testing outlined in the bill that Haag rejects.
We live in a different time than when the HIV epidemic first appeared. We have federal disability discrimination protections and federal health care privacy protections. But most importantly, we have treatments for HIV that allow people to live full, long lives. Everyone has the right to know they are living with HIV. Any barrier to their finding out must be removed.
There are over 56,000 new infections yearly. Expanding HIV testing to be a more routine part of care, particularly in areas where large portions of the population are economically disadvantaged, shows promise of helping us stop these new infections.
It is a change that we need now.
A coalition of community-based organizations serving people with HIV/AIDS in Massachusetts backs a bill to change HIV testing laws in the state. The bill would eliminate the need for written consent for an HIV test and replace it with verbal consent. The bill would also keep all privacy protections intact for people with HIV.
The bill that the Boston Globe editorialized in favor of, and which Kramer writes about, would weaken privacy protections for people with HIV by no longer requiring medical providers to obtain a separate written consent for each disclosure of a patient’s HIV status. Patients would also be forced to opt-out of HIV testing.
Last week, the President released his National HIV/AIDS Strategy which calls for the use of local, evidence-based, cost effective solutions to fight the epidemic coupled with additional education and training for clinicians and patients alike. There are plenty of examples of this approach at work in Massachusetts, which has seen its rate of new HIV diagnoses drop dramatically since 1999 from 1,369 to 617. Imagine how much we could accomplish if pundits, policymakers, and lawmakers rejected expensive one-size-fits-all approaches to public health in favor of what President Obama’s National HIV/AIDS Strategy recommends.
http://www.cdc.gov/hiv/topics/over50/resources/factsheets/over50.htm
"In 2005, Persons Aged 50 and Older accounted for
15% of new HIV/AIDS diagnoses [1]*
24% of persons living with HIV/AIDS (increased from 17% in 2001) [1]*
19% of all AIDS diagnoses [1]
29% of persons living with AIDS [1]
35% of all deaths of persons with AIDS [1].
The rates of HIV/AIDS among persons 50 and older were 12 times as high among blacks (51.7/100,000) and 5 times as high among Hispanics (21.4/100,000) compared with whites (4.2/100,000) [2]."
"This major domestic policy initiative will take aim at the elephant in the room: the American HIV/AIDS epidemic."
Odd, I just heard on ABC.TV news this evening from an M.D. who works for the Fed. Gov't. that AIDS is very rare < 1% in the U.S.
Epidemic?