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11.22.13

Remembering Belynda as the President Signs the HOPE Act

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This post was written by Jeffrey S. Crowley, Distinguished Scholar and Program Director of the O’Neill Institute’s National HIV/AIDS Initiative. Any questions or comments can be directed to jsc26@law.georgetown.edu.

Belynda Dunn. Photo by Marilyn Humphries. Courtesy of GLAD

Belynda Dunn. Photo by Marilyn Humphries. Courtesy of GLAD

Belynda Dunn has been on my mind all week.  Like too many people with HIV, she is someone we lost too soon.  She was an amazing person.  She was caring, passionate, and fun. I got to know her when she served on the Board of Directors of the National Association of People with AIDS (NAPWA) where I was the organization’s Deputy Executive Director.  Her national work, however, was just a small part of her story.  To many people she was a hero working in her own community from her perch at the AIDS Action Committee of Massachusetts.  There, she founded the “Who Touched Me” ministry that had a big impact on creating a pathway for black churches to become engaged in the fight against AIDS. 

She has been on my mind, however, because of the fight she waged at the end of her life.  She needed a liver transplant and was denied one because of her HIV status.  Her insurer labeled it as “experimental” and simply denied it even though she needed it to stay alive.  Not one to take no for an answer, however, she went public with her story and started advocating.  Eventually, the mayor of Boston took on her case.  Her insurer donated $100,000 toward a fund to support transplants for people with HIV and hepatitis C, another insurer donated $50,000, and with private contributions secured by the mayor a total of about $275,00 was raised.  Belynda received two successive liver transplants, but they came too late.  She passed away in March 2002.

I’ve been thinking of Belynda because we are not always sure how our individual actions can lead to longstanding change.  Publicity around Belynda’s case and others with HIV who were being systematically denied transplants fostered a dialogue about whether this was a reasonable restriction given treatment advances that allow people with HIV to lead nearly normal life spans.  This dialogue continues and a significant step forward was taken this week.

Yesterday, President Obama signed the HIV Organ Policy Equity (HOPE) Act.  In its summary of the HOPE Act, the Human Rights Campaign says that the law would permit donated, HIV-positive organs to be used for transplantation in HIV-positive patients, a procedure currently prohibited by federal law.  The law directs the Department of Health and Human Services and the Organ Procurement Transplant Network (OPTN) to develop and institute standards for research on HIV-positive organ transplantation and permits the Secretary to permit positive-to-positive transplantation if it is determined that the results of research warrant such a change.  The Secretary would be required to direct OPTN to develop standards to ensure that positive-to-positive transplantation does not impact the safety of the organ transplantation network.  In addition, the Act amends federal criminal law regarding HIV transmission to clarify that such organ donations are not barred.

President Barack Obama signs S. 330: HIV Organ Policy Equity Act during a signing ceremony in the Oval Office, Nov. 21, 2013. (Official White House Photo by Lawrence Jackson).

President Barack Obama signs S. 330: HIV Organ Policy Equity Act during a signing ceremony in the Oval Office, Nov. 21, 2013. (Official White House Photo by Lawrence Jackson).

On signing the law, the President issued a statement that said, in part, “Our country has come a long way in our understanding of HIV and in developing effective treatments.  And as our knowledge has grown, the possibility of successful organ transplants between HIV-positive people has become more real.  The HOPE Act lifts the research ban.  In time, it could lead to these organ donations for people living with HIV.  And that, in turn, would help save and improve lives and strengthen the national supply of organs for all who need them.”

As our country makes major progress is fighting the HIV epidemic, it is not always clear which actions are most consequential.  I am pretty certain, however, that yesterday’s signing ceremony would not have happened, but for the leadership of Belynda and other courageous people living with HIV.

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