US: Bill to lift ban on HIV positive organ donation passes House committee

by Joseph Patrick McCormick for PinkNews.co.uk
18 July 2013, 12:21am  

   

 

A bill which could eventually allow the donation of HIV positive organs to HIV positive recipients has passed the House after having passed the US Senate back in June.
The HIV Organ Policy Equity Act (HOPE), which is sponsored by both Democrats and Republicans would allow organs from HIV positive people to be donated to HIV positive recipients, and more so would allow researchers to study the safety of such practice.

The Human Rights Campaign also commended the passage of the bill. Back in March, the HRC praised the passage of the bill in the Senate Committe, and in June it passed in the full Senate.

“The HOPE Act represents sound public health policy,” said HRC legislative director Allison Herwitt. “The action by the House Energy & Commerce Committee is a major step forward in removing an outdated barrier which impedes access to lifesaving transplants for persons living with HIV and AIDS.”
The bill was sponsored by Representative Lois Capps.

HIV-positive patients in the US have been lobbying for the right to receive HIV-infected transplant organs for some time. They argue that there are hundreds of HIV-infected organs available every year and that making the change would save lives and give more people the chance of a transplant.
There are more than 100,000 actively waiting for life-saving organs, and around 50,000 more are added annually, and lifting the ban could decrease waiting time for all.

Allowing organs from HIV positive donors to HIV positive recipients with liver or kidney failure could save up to 1,000 people each year.
The ban on HIV positive organ donation was put in place in 1988, and aruments for it being lifted come partly from the fact that the treatment of HIV and AIDS has advanced significantly since.
The Centers for Disease Control issued draft Public Health Service Guidelines in September 2011, recommending research in this area, but said that in the US, federal law blocks it from taking place.
Over 40 medical and patient advocacy groups endorse the act, including the United Network for Organ Sharing, which manages the US’s organ transplant system.

No Place to call home: Aging with HIV/AIDS

No Place to call home: Aging with HIV/AIDS

By: Aaron M. Laxton, Blogger, Activist and HIV-Infected Queer

 

 

I remember once in a class that I was in the professor had the class address issues regarding their own mortality. For  people in their youth this can be extremely hard since this can viewed as morbid. After all, we will live forever and nothing will ever hurt us...right? Obviously as we age we begin to understand that this is not the case; life is always moving and changing. Eventually life will move on and change without us.

　

HIV risk doesn’t stop at 50. In fact, men and women over age 50 account for 17 percent of all new HIV and AIDS diagnoses in the 40 states that have long-term confidential name-based reporting.

During the plague years hospices began to form that would address the needs of those dying from AIDS. It was in these hospices where patients were not viewed as an infectious disease but rather a person who needed love and compassion. A patient covered in Karposi Sarcoma or sufferingly was severe wasting was not feared but rather embraced, held and loved. Although the end of their life was marked by the extreme pain and suffering of AIDS related complications and social stigma, the hospice provided a safe-haven in their final days.

With the advent of improved medications and our understanding of our to treat HIV the amount of people dying from AIDS slowed; as a result the hospices that we once formed to provide support for them were not needed. It is estimated that approximately 50,000 annually die from AIDS in the United States. Some of these organizations restructured to provide other services and others simple were no longer there.

In 2009, people aged 50 and older accounted for 23% of AIDS diagnoses in the United States. Yet older adults are often overlooked in the ongoing HIV/AIDS conversation. Developed for the National Aging Network and others interested in educating older adults, the U.S. Administration on Aging HIV: Know the Risks. Get the Facts. Older Adults and HIV/AIDS Toolkit contains helpful resources and materials specifically designed to inform older adults about the risks of HIV/AIDS and to encourage older adults to know their status.

Now however we have an aging population of patients living with HIV/AIDS and we must consider how to provide the best possible care for them. Anyone who works with aging populations will tell you that finding residential care facilities is a daunting task. I work as a case manager and recently had to do this for a client. This particular client did not have HIV however the task was a challenge none-the-less.

As an HIV positive patient population reaches a time where they might need a residential care facility where will they go? You might say that they can go to any residential care facility that they want. In theory you are right however the facility has the right to refuse whomever they want. Typically once an administrator determines that a patient is HIV positive they are less apt to admit that patient into their facility. This is not something that cannot be hidden since all medical records must be given to the prospective facility.

Also there is the issue of stigma within the residential care facilities. For many of these facilities is it a challenge simply being LGBT. The fear and ignorance of HIV among others residents and staff alike would make it almost impossible for a person living with HIV to live with any quality of life.

One strategy might be to develop facilities that specialize for those living with HIV but does this further perpetuate stigma and ignorance. By creating specialized facilities are we simply shuffling those living with HIV/AIDS "Out of Sight, Out of Mind". That is a slippery slope. What would be next, homes for only white people? Homes for only black people?

If we agree that specialized facilities are not the best strategy then another might be to work with policy and regulators to ensure access to services and facilities by those HIV positive patients. Creating a demand for improve transparency regarding decisions for admissions into programs? Also working with residential care facilities to help educate staff and residents about HIV/AIDS.

We have an ethical obligation to provide great care for our elders not to simply shuffle them away somewhere until they die.

Aaron M. Laxton
My HIV Journey
aaronlaxton@gmail.com