Monday, November 25, 2013

WH Unsure: Person With AIDS Present When Obama Signed HIV Act?

(Official White House Photo by Lawrence Jackson) 

Since the web page for the White House's Office of National AIDS Policy, ONAP, is rarely updated or relevant, I don't check it regularly. Until last week, it hadn't been revised since September 27, two-months ago showing just how inactive the page is for ONAP folks.

On Thursday, November 21, President Obama signed a critical HIV piece of legislation, one that is very important to me and thousands of other people living with AIDS, in general, and particularly those of us over 50 years of age, called the HOPE Act. Extracts from Obama's statement at the bill signing:

Earlier today, I signed into law the HIV Organ Policy Equity (HOPE) Act, a bipartisan piece of legislation that allows scientists to carry out research into organ donations from one person with HIV to another. [...] 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. Improving care for people living with HIV is critical to fighting the epidemic, and it’s a key goal of my National HIV/AIDS Strategy.

I asked the White House if any people living with HIV were present at the signing and received only a list of the attendees standing behind Obama, pictured:

Left to right: Shamey Cramer, Bryan Boyarsky, Dr. Peter Stock, University of California San Francisco Medical Center, Representative Lois Capps, D-CA, Representative Barbara Lee, D-CA, Dr. Daniel R. Salomon, The Scripps Research Institute, Chris Collins, VP and Director of Public Policy, amfAR.

In response to my follow up question about who may be poz, the White House replied:

Michael – the only information I have is names, but have asked. (You may want to check with the folks directly as well).

If the President was signing a bill about breast cancer or women's reproductive health, I'd expect him to have women living with breast cancer present and for the White House to know that the women at the photo-op. It's just needlessly sloppy that the White House can spout politically correct words in a statement about people living with HIV, but when it comes to make sure we're participating in a photo-op that will offer hope and courage to PWAs, the Obama administration is remiss in touting PWA participation or knowing if a PWA was there.

The stigma PWAs live with could have been diminished if the White House information machine had mentioned that at least one person at the HOPE Act signing is openly HIV poz.

Shamey Cramer, who was instrumental in getting the HOPE Act enacted and signed into law, is a longtime survivor of AIDS and was originally diagnosed with HIV in 1985.

As a longtime AIDS survivor myself, I extend deep thanks to Congress, AIDS researchers, President Obama, Shamey Cramer and other PWAs who moved this bill to become reality and provide us with one more option for wellness and staying alive.

1 comment:

Shamey Cramer said...

Michael: I agree,it would have been nice had the WH provided you that information directly, but it certainly doesn't diminish my pride to be there on behalf of all HIV+ Americans for this momentous occasion. Here is a video I produced about my work as a volunteer advocate for the HOPE Act.

Together, as long-term survivors, we can continue to remove the stigma associated with HIV/AIDS. We owe it to those who weren't as fortunate as ourselves. Peace, Shamey