Dan O'Neill

Healthcare Reform for LGBT Americans

Filed By Dan O'Neill | July 08, 2009 2:00 PM | comments

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The healthcare reform debate has become so fluid and has moved so quickly as of late, that trying to follow along is akin to taking a proverbial drink from a fire-hose of health policy. Currently, there are five committees in Congress working on healthcare reform - three jointly in the House and two separately in the Senate, which are now appearing far less likely to cooperate than originally thought.

In the coming weeks, the health reform debate is sure to hit fever-pitch as decisions are made over the most contentious elements of the vying proposals. And it is in this context, during the committees' attempts to merge and vote on their respective bills, that LGBT Americans must struggle to find a voice to ensure their demands are heard.

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Because the stakes are so high, the sense of urgency is so apparent, and the process is so complex, the needs of our community are in danger of being lost in the shuffle; that is, unless we are "fierce advocates" for inclusion in the ongoing health reform debates. Unfortunately, it seems we're so preoccupied these days with everything from DADT to ENDA, that I fear the healthcare policy ship will soon set sail, while we're left flailing our arms on the docks of health disparity.

The National Coalition for LGBT Health recently released its Guiding Principles for LGBT Inclusion in Healthcare Reform to inform legislators of the healthcare issues most critical to the LGBT community as debates are carried out. The National Coalition for LGBT Health states:

Social stigma and systematic discrimination based on sexual orientation and gender identity and expression have led to decades of obstructed access to adequate LGBT-affirmative and culturally competent healtcare and have had significant negative impacts on the overall health of LGBT people.

In order to adequately address these disparities and barriers that prevent LGBT individuals from receiving health care, we need to get busy on educating our legislators and pressuring them to support us and our famililes, specifically in the areas of reducing stigma and inequities in healthcare access and increasing the number of providers competent in providing LGBT-sensitive care .

Nine Key Health Reforms LGBT Americans Should Support

Following is a list of nine of the most salient healthcare reform issues relevant to the LGBT community (supported both by the above National Coalition and the Human Rights Campaign) and a brief summary of why each matters and the progress made of making each of them a reality:

  1. Universal access to health coverage for all: In one fell swoop this would level the healthcare access playing field and make obsolete many of the inequities imposed by DOMA and other legislative barriers to access. Passage of a public plan option and expanding Medicaid would provide a windfall of coverage for previously uninsured LGBT Americans; however, it would not help to remedy the problem of a healthcare workforce that is still, for the most part, out of touch with the unique health needs of LGBT people.
  2. Extension of employer and federally-provided health benefits to LGBT domestic partners, spouses and families: This issue is at the heart of the recent DOMA conundrum. While some progress has been made in extending meager benefits to same-sex partners through Obama's recent memorandum on June 17th, it will take Congressional action to offer full healthcare benefits by overturning DOMA, which Obama said he fully supports. In the meantime, LGBT Americans in committed same-sex relationships get to pay for their health insurance twice, rather than reap the benefits of a family health plan, a practice that a recent report from the Centers for American Progress shows to contribute to higher poverty rates in the LGBT community than in the general population.
  3. Provision of healthcare decision-making authority to domestic partners of LGBT Americans: The President's recent memorandum provides this authority to same-sex couples, but just for Federal employees, comprising less than 1 percent of America's LGBT population. Nonetheless, this action is a step forward. Although numerous large employers and large health plans also extend this right to same-sex couples, it is not yet codified into statutory law.

  4. Expansion of and increased access to healthcare providers that are culturally compenent in issues of LGBT health: Aside from community health centers advertised to specialize in this type of care, there ramains a woefully inadequate understanding of the LGBT communty's needs across the healthcare system. Moreover, there is little training, if any, in current medical school curricula to prepare providers to address the health needs of the LGBT individuals.This matter is addressed extensively in Representative Tammy Baldwin's bill (See below).

  5. Coverage and increased sensitivity to trangender-related services: Currently, insurance companies regularly refuse to provide health coverage for gender reassignment surgery, hormones, and counseling for transgendered individuals under their "transgender exclusion" clauses. Furthermore, transgendered individuals often encounter barriers to accessing gender-specific services (i.e. gynecological or prostate exams) due to inconsistencies between their registered sex or birth sex and how they identify as an adult. These issues are generally addressed in Representative Tammy Baldwin's bill; however, it lacks the trans-specific language needed (see below).

  6. Expansion of federally funded health surveys and research targeting the LGBT community and development of electronic medical records capable of privately capturing data unique to this population: While a dramtic expansion of electronic medical records is currently underway and will be accelerated with passage of proposed health reforms, LGBT-specific language is still left out of research and surveys measuring health disparities - focusing only on disparities in race, ethnicity, disability and gender. For example, many medical records still use heteronormative demographic categorizations, as local regulations currently determine how such data is captured.

  7. Development of a National AIDS Strategy and increased funding for HIV prevention: Jeff Crowley, the openly gay Director of the Office of National AIDS Policy, hopes to have a National AIDS Strategy under development by the end of the summer with the goal of reducing HIV infection, increasing access to care, and reducing health disparities. Moreover, a flurry of recent local and national reports showing a spike in new infections among men-who-have-sex-with-men (MSM), especially gay men of color, is forcing Federal health agencies into action. Locally, the National HIV Behavioral Surveillance study focusing on MSM will be released sometime this summer or fall, which will likely draw more attention to the plight of MSM today.

  8. Expansion of reproductive healthcare services: All methods of conception, including in vitro fertilization and surrogacy must be covered to offer the full spectrum of options for creating LGBT families.

  9. Inclusion of mental health parity: Accessing coverage for mental health care is a challenge for most Americans; however, LGBT individuals are already significantly more at risk for suffering from mental health disorders and substance abuse than the general population, making this issue especially important to our community.

What's Been Done So Far?

The Senate Committee on Health, Energy, Labor and Pensions (HELP) is now in the lead, as it enters mark-up of the final, and most divisive title of its proposed bill, the Affordable Health Choices Act. This week HELP Committee members will begin debate over whether to include and how to finance the "public plan option," probably the most significant challenge for each of the five committees with purview over health reform. Despite its headstart over the House, so far in the Senate there has been a dearth of discussion on healthcare disparities in general and no mention of LGBT-related healthcare reforms.

However, on the House side, the discussion draft of the Tri-Committee bill (a collaborative effort between the Committees on Energy and Commerce, Ways and Means, and Education and Labor) has been surprisingly inclusive of important HIV/AIDS matters that disproportionately affect our community. In particular, the bill includes the Early Treatment for HIV Act (ETHA), giving states the option to extend Medicaid eligibility to HIV positive people who are not yet classified as disabled because they lack an AIDS diagnosis.

Without ETHA, HIV-positive individuals will continue to be faced with a perverse Catch-22; they will remain ineligible to access HIV treatment through Medicaid that would prevent them from developing AIDS until they'd become disabled from the very AIDS-defining illnesses that such treatment would prevent.

The House discussion draft also includes language that allows AIDS Drug Assistance Program (ADAP) expenditures to count towards Medicare Part D true out-of-pocket costs, helping HIV-positive individuals access catastrophic coverage far sooner, so as to avoid becoming impoverished by astronomically high drug costs.

HIV/AIDS advocates have long requested action on these measures, and their inclusion in the draft House bill represents encouraging momentum that should be applauded and sustained through the rest of the healthcare reform debate. However, still absent from the draft bill is broader language that both addresses the systemic inequities to accessing care that all LGBT Americans face and the terrible lack of healthcare providers that are sensitive to the unique health needs of LGBT patients. The final House bill will be introduced this week and mark-up will begin shortly, with the intention of voting on a final bill around July 27th.

Despite having addressed more of our concerns than any other proposal on the table, Rebecca Fox, Director of the above-mentioned National Coalition for LGBT Health, has identified several areas in which the current discussion draft of the House bill falls short in minimizing LGBT health disparities and makes suggestions for improvement.

  • Specifically, she states that the definition of "health disparities" used throughout the proposed legislation is insufficient and should be broadened to state that a population be delineated by race, ethnicity, sex, geographic setting, sexual orientation, gender identity, or other category determined appropriate by the Secretary.
  • Furthermore, in some instances, amendments to the proposed legislation sought to limit the use of broader language that would include the LGBT community. For example, one amendment proposes the insertion of "racial and ethnic minority groups" and "racial and ethnic minority individuals" in lieu of "under-represented minority groups" and "under-represented minority individuals." Fox recommends that legislators retain the original language in such instances.
  • Frequently, the draft bill mentions the need to collect data on health disparities in many realms of the healthcare system to help ameliorate inequities among different populations. As such, while disparities related to race, ethnicity, disability and geography are often addressed in establishing premiums and payment rates for a public health insurance option, the proposed legislation is silent when it comes to LGBT health disparities.
  • Finally, regarding the proposed creation of a Health Benefits Advisory Committee, the current draft states that membership will include those knowledgeable about "disparities relating to race, ethnicity, and disabilities;" however, there is no mention of including those knowledgeable about disparities related to sex, gender or sexual orientation.

Our Big Opportunity for LGBT Health Reform

The next couple of weeks is our best shot at having these and other LGBT-specific reforms incorporated into the final health reform proposals; however, it will be much more of an up-hill battle in the Senate than in the House.

If there's any hope that LGBT-specific language will be included in the healthcare legislation juggernaut, it will come in the form of amendments inspired by Representative Tammy Baldwin's recently released,Ending Health Disparities for LGBT Americans Act (H.R. 3001).

In the wake of Department of Justice debacle last month and the extension of some benefits to domestic partners of Federal employees through the Presidential memorandum, sans the coveted healthcare ones that such couples seek most, President Obama's touting of Tammy Baldwin's recent bill helped appease many disgruntled LGBT Americans. However, a great deal still needs to happen in order for the key elements of Baldwin's bill to be realized in health reform.

Joining Representative Baldwin in supporting this legislation, which she has been working on for more than a year, are Representatives Henry Waxman (D-CA), Barbara Lee (D-CA), Mike Honda (D-CA), and Nydia Velazquez (D-NY). In its preamble, the Ending Health Disparities for LGBT Americans Act outlines its purpose:

To address the health disparities experienced by lesbian, gay, bisexual, and transgender Americans, to eliminate the barriers they face in accessing quality health care, and to ensure that good health and well-being is accessible to all.

Specifically the bill "would be the first comprehensive approach to establish nondiscrimination policies for all federal health program. It would also fund training for health care providers, extend Medicare benefits to domestic partners, create an office of LGBT Health within the Department of Health and Human Services, and fund local health centers that specialize in LGBT services."

Last I checked, Senator Joseph Lieberman (I-CT) was supposed to be advancing a corresponding bill on the Senate side, the Domestic Partner Benefits and Obligations Act (S.1102). However, not only has there been virtual silence from his office on the issue since I last saw him standing behind Obama's shoulder at the signing of the Memorandum on Federal Benefits and Non-discrimination; but also, his bill, like the President's memorandum, only extends benefits to Federal employees.

It seems this legislation has a long way to go before it's on par with Rep. Baldwin's bill which is far more comprehensive in its coverage of LGBT people. As such, the prospects do not bode well for the inclusion of similar LGBT amendments into either of the Senate bills set to emerge from the Finance or HELP Committees later this summer.

In sum, the current state of LGBT healthcare reform is in total disarray. We have clear goals that we want to accomplish, but no clear plan for how to include them in overarching health reforms within such a limited timeframe. I'm surprised that more LGBT Americans are not up-in-arms at this critical juncture in potentially securing access to LGBT-sensitive health care for generations to come.


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Dan O'Neill Dan O'Neill | July 19, 2009 2:50 PM

Quick update: On page 987 of the House healthcare reform bill (now officially called, America’s Affordable Health Choices Act of 2009) dropped this past week, the following new provision appears:

"The Assistant Secretary shall...develop standards for the collection of data regarding the Nation's health...and include standards, as appropriate, for the collection of data on health and health care by race, ethnicity, primary language, sex, sexual orientation, gender identity..."

Although this addition addresses just one of the many changes that need to occur to adequately reform LGBT health care, it is a very positive sign. Collecting data that demonstrate the health disparities that LGBT people face, is a critical first step in fixing the problem.

That said, we still have a long way to go in seeing that the other healthcare needs identified in my post above are sufficiently addressed. Moreover, the recently added provision could still be removed through amendments on the House floor, before a final vote is taken at the end of the month. -So we still may need to fight to keep it in. Fingers crossed.