Allan Acevedo | Political Spectrum
As treatment, care and the reality of HIV have changed over the years, it is striking that our laws and policies have not kept up to pace with new knowledge.
This week, California lawmakers began to take steps to modernize laws affecting those living with HIV.
Nationally, Senator Barbara Boxer introduced bipartisan legislation that would allow for research on organ donation between people who are HIV-positive. The HIV Organ Policy Equity (HOPE) Act recognizes that a ban established in 1988 is outdated and does not take into account our modern understanding of HIV and AIDS.
With new medication that allows for those infected with HIV to live longer and healthier lives, more patients are developing kidney and liver complications. But the current ban does not allow for research into the possibility of people living with HIV donating organs to other people with HIV.
This bill, if the research is found to be positive, could lead to expanded options for HIV patients in need of organs. It has the potential of alleviating the entire organ transplant system in the country with the introduction of new potential donors.
The HOPE Act would direct the Department of Health and Human Services to evaluate progress in medical research into HIV organ donation and, depending on the outcomes, authorize the Organ Procurement and Transplantation Network to create a process for these HIV-organ transplants.
Here in California, Senator Mark Leno has also introduced legislation dealing with HIV. Leno proposed to modernize our state laws dealing with HIV confidentiality and information sharing. Current law bans disclosure of HIV information between caregivers, and as medication has improved and care has expanded, outdated laws have actually created hindrances for patients attempting to transition care or coordinate among multiple providers.
Leno’s bill, SB 249, also recognizes that not all new types of HIV tests are included in existing privacy protection guidelines. The bill would explicitly expand privacy requirements to all types of HIV tests including blood, urine and saliva tests.
I applaud our California lawmakers for taking the initiative to streamline and expand care options for HIV patients. This is an often over-looked community in need of stronger advocates. I would challenge our representatives to also work on HIV education in their campaign for modern laws.
The realities of HIV are still too diluted in the specter of confusion and deaths from the 1980s. Laws created in the 1980s – including the current organ donation plan – were not drafted with any vision for how HIV exists in the world today.
We may not have people dying in the streets, but the struggles are no less real. HIV treatment is not just a health care issue. It is a community issue. It is something we have to address holistically, and I can only hope that as lawmakers are recognizing outdated policies and laws, we can also recognize outdated prejudice and stigma associated with HIV.
Those societal issues impact care. A study published by the Journal of Acquired Immune Deficiency Syndromes showed that 80 percent of those infected with HIV do not consistently use health care options in place for them. It also showed that 22 percent of patients never established care with a doctor after diagnosis.
These are striking but not surprising figures. With the stigma and outmoded ideas of HIV, it makes sense that some people would prefer to ignore the problem rather than seek and adhere to care plans.
This is especially true for people who can’t afford care or do not have their own health care insurance. There are onerous processes that one must go through to get care established, with paperwork that expires and must be renewed regularly.
As someone who relies on these programs for my care, I have had difficulty getting appointments when I need them – knowing when paperwork expires and requires renewal – to the point where I could not get medication when I needed it.
There are many barriers to establishing and maintaining care, but as we move forward in this new era of HIV, we must recognize the needs of HIV patients and create policies and procedures that promote adherence to care, not demoralize those seeking to take care of themselves.
A more in-depth review of HIV treatment in the United States is needed, not just a piecemeal approach to fixing individual and specific problems. In order to make this review a reality, though, those of us who need it must be public advocates for ourselves.
The reforms Boxer and Leno are introducing are needed, but there is much more work to be done.
—Allan Acevedo is co-founder and president emeritus of Stonewall Young Democrats of San Diego. He has worked on multiple political campaigns and served on numerous boards including the San Diego Democratic Club, California Young Democrats, Gay-Straight Alliant Network and Equality California PAC. Follow @allanacevedo on Twitter.