Make America Sick Again

Published in: September-October 2017 issue.


THE 2016 ELECTION stands to have far-reaching effects on public policy affecting LGBT people and people living with HIV, both in the U.S. and abroad. A number of major advances were achieved during the Obama administration, including marriage equality nationwide, an end to the ban on LGBT people serving openly in the military, the promotion of LGBT equality as a core goal of U.S. foreign policy, and important nondiscrimination regulations covering education and healthcare. A myriad of policy changes increased attention to LGBT health through support for cultural competency training, expanded collection of sexual orientation and gender identity (SOGI) data in healthcare settings and on surveys, and the creation of a Sexual and Gender Minority Research Office at the National Institutes of Health.

All of this is now at risk. In February 2017, the Trump administration’s Departments of Justice and Education withdrew Obama administration guidelines prohibiting anti-transgender discrimination in schools as a form of sex discrimination prohibited under Title IX of the Education Amendments of 1972. The guidance required schools to allow transgender youth to use bathrooms and other school facilities based on their gender identity. President Trump did not declare June as LGBT Pride Month, as President Obama had done, and his foreign policy has been coherent only in the lack of priority given to human rights concerns.

In March 2017, the U.S. Administration for Community Living (ACL), which oversees and funds elder and disability services, announced that it was removing sexual orientation and transgender status questions from the National Survey of Older Americans Act Participants, questions that had been added in 2014. Following overwhelming public comment in favor of restoring the questions, the ACL announced in June that it would restore the sexual orientation question. However, it did not restore the transgender question, and it maintained its reversal of plans to add SOGI questions to a national disability survey that it conducts.

What the ACA Accomplished

It is in the area of health policy that the LGBT community and people living with HIV (PLWH) stand to lose the most. Key provisions of the Patient Protection and Affordable Care Act (ACA), such as the ban on insurance company discrimination on the basis of a pre-existing condition, have helped more than twenty million previously uninsured Americans gain access to health insurance. This has disproportionately benefited LGBT people and PLWH.

Under the ACA, in states that expanded Medicaid, low-income people up to at least 138 percent of the federal poverty level (FPL) can qualify for coverage based on income alone. This has been extremely helpful for low-income LGBT people and PLWH who previously could not qualify for Medicaid because they did not have dependent children or a disability, or because they were not poor enough. In many Southern, Plains, and Rocky Mountain states, where Medicaid expansion has been rejected, one must be extremely poor and disabled or have dependent children to qualify for Medicaid. In Alabama, a family of three must earn less than sixteen percent of the federal poverty level—$3,221 per year—to qualify for Medicaid. In Texas the cutoff is nineteen percent.

Between mid-2013 and early 2015, the percentage of lesbian, gay, and bisexual (LGB) adults without health insurance decreased from 22 to eleven percent. While the implementation of key elements of the ACA undoubtedly played a major role, so too did growth in the number of states recognizing same-sex marriages, and the federal recognition resulting from the 2013 US v. Windsor case. The percentage of uninsured transgender people with low income dropped from 59 in 2013 to 35 in 2014.

Before the Medicaid expansion, PLWH had to have an AIDS diagnosis, be pregnant, or have dependent children in order to qualify for Medicaid. In the 31 states that had expanded Medicaid eligibility, those without children and without an AIDS diagnosis can qualify if they’re poor enough. The U.S. Centers for Disease Control and Prevention (CDC) and the Kaiser Family Foundation estimate the proportion of people living with HIV who lacked health insurance to be 22 percent in 2012, dropping to fifteen percent in 2014 following implementation of key provisions of health care reform. It is undeniable that the ACA, however imperfect in many ways, has dramatically improved PLWH’s access to health care. This is especially important for older people living with HIV, who often require complex, expensive care.

Among the twenty million people newly insured under the ACA, people of all racial and ethnic backgrounds benefited. The Kaiser Family Foundation estimates that from 2013 to 2015 the percent of uninsured individuals declined in a number of key demographics: from thirty to 21 percent for nonelderly Latinos; from nineteen to eleven percent for African-Americans; from fourteen to seven percent for Asian-Americans; and from twelve to seven percent for non-Hispanic whites. The drops for blacks and Latinos in particular helped to alleviate a structural driver of ethnic health disparities in the U.S.

Indeed, the lack of health insurance and the resulting lack of access to routine preventative care is a major structural cause of economic inequality between whites and minorities. What’s more, black and Latino LGBT people can experience even higher disparities. For example, HIV disproportionately burdens gay and bisexual men and transgender women. Among these populations, blacks and Latinos are the most vulnerable. Lesbian and bisexual women are less likely to get preventative cancer screenings like Pap tests and mammograms, in part due to lower rates of insurance coverage. Lesbian and bisexual women are also more likely never to have given birth, which is a risk factor for breast cancer and possibly ovarian cancer. Obesity, substance use, and smoking are also risk factors—and they’re more prevalent among lesbian and bisexual women than among heterosexuals. It is probable that black and Latina lesbian and bisexual women have the lowest rates of preventative cancer screenings, and the highest cancer mortality rates, of all U.S. women.

Nightmare on Capitol Hill

Last May, the U.S. House of Representatives narrowly passed the American Health Care Act, which would repeal and replace the ACA. The House bill would end the Medicaid expansion, dramatically reduce Medicaid spending (by nearly $1 trillion over the next decade), and permit states to opt out of ACA provisions that mandate coverage for preexisting conditions and essential health benefits such as cancer and HIV/STD screenings.

A Congressional Budget Office (CBO) analysis found that the House bill would result in 23 million Americans losing their health insurance by 2026. In addition, the CBO estimated that premiums for older adults would skyrocket under the Republican House plan. A 64-year-old American with an annual income of $26,500 could see his or her health insurance premiums rise from $1,700 a year under the ACA to between $13,600 and $16,100 a year under the Republican plan. LGBT people and PLWH are likely to be overrepresented among the 23 million who would lose their health insurance if the House bill becomes law.

A U.S. Senate bill under consideration as I write would also end the Medicaid expansion, dramatically cut Medicaid funding, and reduce subsidies for private insurance. Both the Senate and the House bills would end Medicaid as an entitlement, instead offering states a lump sum of funding to dispose of as they choose. This would dismantle the public health infrastructure first put in place by President Lyndon Johnson’s Great Society program in 1965. Under the Senate plan, per capita funding would be tied to the overall rate of inflation, which is typically lower than medical inflation. This would result in a deeper cut to funding for Medicaid than in the House version. The Senate bill would allow states to opt out of many of the ACA’s health insurance requirements, including rules for what constitutes a qualified health plan and what health benefits must be covered. The ACA currently requires coverage of essential health benefits, including HIV/STD screening and behavioral health care. These benefits are especially important for LGBT people, those living with HIV, and other vulnerable populations. The bill would also defund Planned Parenthood, which provides millions of STD and cancer screenings to women and men across the U.S.

The Trump Budget

The Trump-Pence budget, introduced in May 2017, would sharply cut HIV and chronic disease prevention programs, and eliminate entire HIV care programs that date back to the mid-1990s. It would axe Medicaid by $800 billion over the next decade and cut the Children’s Health Insurance Program (CHIP) by twenty percent over the next two years. One in three American children—46 million in total—receive health care through either Medicaid or CHIP.

In addition, the Trump budget proposal would:

  • Cut funding for the prevention of HIV/AIDS, viral hepatitis, sexually transmitted diseases, and tuberculosis at the CDC by seventeen percent. Nearly twenty million new sexually transmitted diseases are diagnosed each year in the U.S., half of them among fifteen- to 24-year-olds. Diagnoses of chlamydia, gonorrhea, and syphilis are increasing and cost an estimated $16 billion a year to treat. Because we don’t have a cure or a vaccine for HIV and many STDs, cutting funding for evidence-based detection and prevention programs means that epidemics will continue to grow, costing more resources later.
  • Reduce funding of the Ryan White HIV/AIDS Program—a cut of $59 million—eliminating the AIDS Education and Training Centers and Special Projects of National Significance. The Ryan White HIV/AIDS Program would become even more critical if people living with HIV lose health insurance under the GOP plans. Funding for the Ryan White Program has been essentially flat since the early 2000s, even though the number of people accessing Ryan White services has nearly doubled. The education centers and special projects program also assist with rapid response to outbreaks of disease. When nearly 200 people were diagnosed with HIV in rural Scott County, Indiana, over a fifteen-month period in 2014-15, the Midwest AIDS Education and Training Centers provided in-depth training to doctors and care providers and helped get those newly diagnosed with HIV into immediate care.
  • Reduce funding for the National Institutes of Health by seventeen percent, and cut funding for the National Institute of Allergy and Infectious Diseases, where most HIV/AIDS research is conducted, by eighteen percent.
  • Reduce by $1.1 billion U.S. funding for treatment of people living with HIV in Africa and other parts of the world. AmfAR estimates that this cut of nearly twenty percent in global HIV funding would cost more than one million lives and cause 300,000 children to become orphans.

While what ultimately passes the Congress and is signed by Trump may be less draconian, it is likely that major federal policy and budgetary changes will be enacted that significantly reverse the expansion of access to health insurance that disproportionately benefited LGBT people and PLWH. This will have major fiscal implications for the states, many of which are already straining to balance their budgets. The Trump/GOP proposals would make it much more difficult for people with pre-existing health conditions such as HIV, as well as older Americans, to obtain affordable health insurance, and would reduce the health benefits for those who keep their coverage. Both of these changes would disproportionately harm LGBT people, PLWH, and other people with chronic diseases.


Sean Cahill, PhD, is director of health policy research at the Fenway Institute.