Of the people, by the people, for the people (including those with mental illness or HIV)

Macro Ten Dollar Bill

By Ruth Hansen

Elections are over, it’s cold, and Americans are transitioning federal administrations. Newly elected members of Congress have been sworn in, and soon there will be a Presidential inauguration. There’s no shortage of news — politically, socially — and no shortage of pundits. So I am emboldened to throw my hat and my opinions into the ring. My recommendations affect criminal law, funding for social research, funding for health research and development of treatments, and health care coverage.

Some of the people who are nearest and dearest to me have medical conditions that are popularly stigmatized. Decisions made by the new administration will affect all of us; but there are some opportunities to adjust state and federal policy that could significantly improve the lives of people with these specific conditions. Many individuals, with much to offer society, see their opportunities curtailed due to structural inequities. It’s a matter of justice as much as compassion.

The two medical conditions I am focusing on are serious and persistent mental illnesses and HIV/AIDS.
Why those two? What do they have in common? Both are serious medical conditions that require professional help, and both affect (or create) populations that are marginalized. A friend and colleague drew my attention to a piece written by Lawrence Gostin, O’Neill Professor of Global Health Law at Georgetown University, who noted that levels of funding and research priorities for these two conditions are widely different. (I’ll include a list of sources at the end of the post so you can find them if you are interested.) Gostin argues that differences in age of symptomatic onset and education (and, implicitly, earning potential and social position) have led to differences in the social mobilization and advocacy on behalf of people with mental illness and HIV/AIDS. Over much of 2016, I explored the experiences of people with these socially stigmatized medical conditions. I read and analyzed first-person accounts written by people with either serious and persistent mental illness or with AIDS. I wanted to read personal experiences of receiving help — professional and personal — and of helping others, and see what similarities and differences I could find, and whether there were some other possible explanations.

Setting much of that aside for another day, one aspect I considered was implications for practical improvements. These fell into workplace and interpersonal settings, public advocacy efforts, and my focus today: government policy. I freely acknowledge that these are complicated issues, and others have invested much more time and developed considerable expertise in each of these fields. On the basis of my limited but intensive analysis, here are my suggestions for several steps the U.S. Congress and state legislatures could take to improve the experiences of individuals with HIV or mental illness.

  • Currently, a diagnosis of HIV is criminalized disproportionately to other similar diseases, despite treatments that are effective at reducing the viral load and preventing transmission. Legislatures should revisit the policy of treating nondisclosure of HIV status as a sex crime, considering (a) legal treatment of similarly situated STDs, (b) recent advances in treatment and prevention of HIV, and (c) the public health concerns that criminalization may depress testing and treatment. (For more, see Strub; also Center for HIV Law & Policy.)
  • Given the link in the public imagination between mental illness and gun violence, and that the perceived threat leads to fear of individuals with mental illness, Congressional limits on funding health research on gun violence ought to be repealed. Gun violence is an issue larger than and often distinct from mental health, but data collection and analysis should properly be funded to better understand its actual linkage and impact. (For more, see McGinty, Webster, & Barry; also Link, Phelan, et al.; also Kodjak.)
  • There is evidence that relying on market mechanisms to prioritize the development, testing, production, and availability of effective, safe pharmaceutical treatments for mental illness, substance abuse, and AIDS has not necessarily aligned with public health interests. Congress should incentivize development, responsible testing, and access to both pharmaceutical and non-pharmaceutical treatments. (For more, see Strub; also Shilts; also Kennedy & Fried.)

Finally, the Affordable Care Act (ACA), in combination with the previously passed Mental Health Parity and Addiction Equity Act (MHPAEA) of 2008, was predicted to extend coverage of behavioral health insurance to an estimated 62 million people. Of these, 27 million were previously uninsured and would rely on the health care exchange or Medicaid for their new insurance. Others were previously insured but had significant limits on benefits for behavioral health. The federal Substance Abuse and Mental Health Services Administration (SAMHSA) has been working on outreach to individuals with behavioral health concerns to encourage use of the ACA marketplace. However, as of July, 2016, nineteen states had decided not to implement the Medicaid expansion, depressing the ability of low income individuals to access health coverage. States and the federal government should cooperate to resolve this gap, under whatever mechanisms are ultimately selected. (For more, see Frank, Beronio & Glied; also SAMHSA; also Kaiser Family Foundation.)

Obviously, this leaves me recognizing the importance of federal policy in the ability for millions upon millions of individual Americans to access care. Further, regarding stigmatized conditions, I’m left thinking about the effect that federal policy has on how people view accessing care — disclosing their condition, fighting for an appointment or an insurance payment or anything else that doesn’t go right. How Congress views the “rightness,” the importance of caring for certain people affects how others view it. This is true whether the “certain people” are others, one’s self, or family members. As I mentioned, I know and love people who have been affected by stigmatized conditions. I see them as people. I want the same from my government, and I want the same from my society.


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