Transgender Healthcare: a brief legal history

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SMALL GLITCH WITH PROJECT: PLEASE READ

Post 6-10 were not posting on this blog , so I posted them on the original blog (for course reflections) and re-blogged them to this page! Sorry for any inconvenience.

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Post 10: Reflection

I think that this research topic has pushed me in a way that other research topics have not. I’ve had to look through court documents which is something I’ve never done before, and has been an exercise in finding the important data and information. I also think that although a lot of the research I had to look through was very dense I’m very interested in the topic and it’s been very informative, and i feel like if I research healthcare or insurance in the future I will have a running start.

This project has enabled me to see that because institutions are so complex it becomes easy for entire groups of people to fall through the cracks, even on something as important as healthcare. I’ve also learned that even when discriminatory policies are shut down in one case, institutions (like insurance companies) will create whatever loopholes necessary if it means financial gain. What I hope others gain from this project is an understanding of how systems of healthcare work against transgender folks accessing care, so that there can begin to be a dialogue about how to fix this disparity in care.

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Post 9: Annotated List Of Additional Resources

https://www.healthcare.gov/

I feel like this is an obvious one, but still. This is a link to government healthcare. Although it isn’t perfect, having healthcare is better than not having it. Not having it means that if you ever go into the ER for an emergency its going to cost you out of pocket money that most people don’t have in their pockets. (If this one doesn’t appeal keep shopping until you find a plan you like/can afford).

http://www.hrc.org/blog/whats-in-the-aca-for-transgender-people

The link above will give you more info about what services the Affordable Care Act guarantees you, as well as an overview of tips on how to fill out the healthcare.gov insurance application as a transgender individual.

http://www.nytimes.com/interactive/2015/05/15/opinion/editorial-transgender-timeline.html?_r=0

Although the link above in no way is a complete list of milestones it does offer touchstones in the movement as well as providing information on some important legal changes.

http://www.pbs.org/newshour/rundown/transgender-people-still-denied-health-services-despite-affordable-care-act/ 

The ACA has done a lot to try and insure that those who identify as transgender can have access to care. However, as is usually the way of things, the way paperwork and large administrative bodies work is slowly, and ACA still has to work out the kinds of being inclusive to all gender-identities.

http://www.wrapofdc.org/Documents/How%20to%20Advocate%20Effectively%20for%20Yourself.pdf  

The above link discusses how to advocate for yourself and what steps to take in making sure you’re understood. If things do go wrong, you need to know how to advocate for yourself. (Even if things aren’t going wrong and you want to walk in the door prepped this is also for you!)  This may seem like a silly step but being able to say, Stop, No, Can You Repeat That, I Don’t Understand, Can We Discuss Other Options to a medical professional can be intimidating and it can help to prepare your self. The best way to get the care you need is to be able to verbalize what you need/want.

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Post 8: Making Connections 

How Does All of This Relate to The Course Material?

What I’ve tried to accomplish with this blog is to show how the transgender community faces discriminatory policies implemented by insurance providers that block access to healthcare. First, I examined what tactics/terminology the insurance companies used in order to deny coverage for transition care. Then I examined three legal cases where transgender folks fought against the system, establishing time again how transitional care was medical and should be regarded by insurance and the government as such. I then took a look at how transgender people themselves view the healthcare system and what they feel blocks their access to care. I then tried to explain what laws are working to protect this community and what that means in practical applications.

Something GWS 294 has taught me is to critically examine what bodies are valued, and acknowledge what happens when their not. This is the approach I took to this project. Transgender bodies are not valued in the healthcare system, and what happens is not being able to access not only transition related care but potentially life saving care. Taking this approach to this project allowed be to look at a very complicated topic and boil it down to; what is the human impact when people are denied care, how and why does it happen.

A specific reading from the course that exemplified this approach was Sima Shakhsari’s Shuttling Between Bodies and Borders. The reading examines what it means to be transgender through a global perspective. What area’s of the world value transgender bodies and in what way? Are they condemned or valued? How are their stories reproduced and why is it done in that way? What happens when they are not valued? What I hoped to do with this project was take a similar style critical analysis for a very layered issue.

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Post 7: So What Right Do You Have?

What Laws Got You Covered?

(Note: All laws and their descriptions are cited to source 1)

The Affordable Care Act (ACA): prohibits sex discrimination in hospitals and other health programs or facilities receiving federal financial assistance as well as bias based on race, national origin, age, and disability. Courts and the Department of Health and Human Services have interpreted the law to prohibit discrimination against people who are transgender or who fail to conform to gender stereotypes.

What this means in real terms: This means that when you walk into a medical facility that receives government money they are not allowed legally to discriminate against you. This will apply to a lot hospitals, however private for-profit hospitals, which can sometimes be listed as religious or Christian, be wary of (unless there are overarching state laws preventing discrimination in the medical field). This means that hospitals should not be able to refuse to treat or admit you. They cannot deny you referrals, counseling, or require you to participate in ‘conversion therapy’. And they CANNOT HARASS, INTIMIDATE, COERCE or INTERFERE WITH YOUR ABILITY TO ACCESS HEALTHCARE.

The Health Insurance Portability and Accountability Act (HIPAA) protects the privacy of individually identifiable health information, including information related to a person’s transgender status and transition. It also gives patients the right to access, inspect, and copy your protected health information held by hospitals, clinics, and health plans.

What this means in real terms: HIPPA protects your privacy. When you walk into a doctors office, unless you are at immediate risk of hurting yourself or someone else (in which case the doctor has a duty to protect you from yourself or you from others), that doctor CANNOT UNDER ANY CIRCUMSTANCES disclose any information you give them about your gender-identity status and/or any transition related care you’ve discussed (they also can’t give out your medical records generally). You should be able to discuss your gender-identity status and related care in confidence and safety because they legally cannot make that information public.

Medicare and Medicaid: regulations protect the right of hospital patients to choose their own visitors and medical decision-makers regardless of their legal relationship to the patient. This means that hospitals cannot discriminate against LGBT people or their families in visitation and in recognizing a patient’s designated decision-maker.

What this means in real terms: If your are in the hospital, anyone you want to be a visitor is a visitor (so long as its visiting hours). If your in the hospital and you’re unconscious, whoever you’ve chosen to make medical decisions for you (like if you’ve been in an accident, your unconscious and the doctors need permission to operate, that person they ask is your medical-decision maker) the doctors must respect them as that person and respect their choices. This means that if you don’t want your blood relatives being the ones to make that choice, you have other options.

Joint Commission Hospital Accreditation standards require hospitals to have internal policies prohibiting discrimination based on gender identity and sexual orientation.

What this means in real terms: This law means that even if a hospital isn’t getting federal funding the hospital should still have some kind of anti-discrimination laws that protect you. If you are concerned you can always google the hospital to make sure their are protections for you. If you were taken there during an emergency, and you feel uncomfortable and/or you feel your care is compromised, you have the right (so long as you are stable) to request to transfer hospitals or file a complaint. 

Know your rights. You are your own best advocate. 

Resource:

1. “Know Your Rights: Healthcare.” National Center for Transgender Equality. 2016. Web. <http://www.transequality.org/know-your-rights/healthcare>.

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Post 6: How Do Transgender Folks Feel About the Healthcare System?

Some Key Facts and Statistics:

Survey participants reported very high levels of postponing medical care when sick or injured due to discrimination (28%) or inability to afford it (48%)

Harassment and violence in medical settings: 28% of respondents were subjected to harassment in medical settings and 2% were victims of violence in doctor’s offices

Lack of provider knowledge: 50% of the sample reported having to teach their medical providers about transgender care

If medical providers were aware of the patient’s transgender status, the likelihood of that person experiencing discrimination increases

Some Key Facts and Statistics about Insurance:

Female-to-male transgender respondents report postponing any care due to inability to afford it at higher rates (55%) than male-to-female transgender respondents (45%) 

Those who have private insurance were much less likely to postpone care because of inability to afford it when sick or injured (37%) than those with public (46%) or no insurance who postponed care (86%) 

Study participants were less likely than the general population to have health insurance

(Note: All statistics above are cited from source 1 and 2 below).

What can we draw from these statistics?

First and foremost, the healthcare system as a whole, is failing an entire group of people. Although some of the results reported may apply to other populations accessing healthcare, the reality is that these statistics show that their is an obvious gap in the care provided for transgender individuals. And this lack of healthcare is coming from two fronts according to respondents, its coming both from the institution and through their ability to access insurance.

For transgender individual, going through the healthcare system is not easy. Not only do they have to teach their providers about transgender care, by identifying themselves as transgender are opening themselves up to discrimination, harassment, and possible violence. Showing incompetency not only in the lack of knowledge for your patients needs, but then discriminating against them is enough to discourage people in the transgender community from accessing healthcare. The barrier of a volatile environment from the medical field is quite frankly, disgusting. The healthcare industry should have some underlying drive to help and provide the best care possible to those seeking it, provide them with a list of people who can (if they are unaware/not knowledgeable), or at least have a basic level of respect for individuals seeking care.

The second barrier that transgender people are facing is insurance. The first problem is being able to afford it. Most people realize very quickly that even a check up visit at a doctors office or a one time prescription is going to cost a mini-fortune. To offset the costs of healthcare people buy insurance.

Here is where two problems occur. The first is the absorbent cost of obtaining insurance. Although some people may have the ability to buy into their employers insurance, this is not the case for everyone. Public insurance programs have their own challenges, but they are available. However, as it can be seen with the survey above, this system works on the assumption that people have enough money to pay insurance rates, co-pays and travel expenses. Though some of these costs cannot be avoided, the system of insurance assumes that people have the financial resources to pay for these things. The second problem is that, up until 2014 being transgender was considered a per-existing condition, meaning that insurance companies could deny coverage. This applied not only to transition related care, but also common health problems, because that individual was identified as transgender.

Healthcare is a necessity, not a luxury, however, they have made themselves into an industry by making their at-costs so exorbitant that almost no-one can pay those costs out of pocket. This makes insurance an indispensable resource to the general public as a way to access necessary care. Insurance is not the golden solution, especially for transgender people. People who can’t afford it, even with subsidized costs, have to go without and it is these people who put off care in order to not pay for care at-cost. Not only is this a barrier, but for those fortunate enough to access care are faced with the barrier of discrimination for being transgender. The healthcare system does not do nearly enough to provide care for transgender people.

Resources:

1. Sanchez, Nelson F., John P. Sanchez, and Ann Danoff. “Health Care Utilization, Barriers to Care, and Hormone Usage Among Male-to-Female Transgender Persons in New York City.” Am J Public Health American Journal of Public Health99.4 (2009): 713-19. Web.

2. “National Transgender Discrimination Survey Report on Health and Health Care.” Www.thetaskforce.org. National Center for Transgender Equality and the National Gay and Lesbian Task Force, 2010: 1-24. Web.

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Post Five: Denee Mallon Chicago’s Living Legal Change

What is the personal narrative, behind a case like this?

Denee Mallon made history, being one of the first to receive gender reaffirming surgery paid for by Medicare. She challenged the government insurance’s ban on transition healthcare procedures.(1) Medicare’s ban was implemented in 1989 because it was ,”experimental,” with a, “lack of well controlled, long-term studies of the safety and effectiveness of the surgical procedures and attendant therapies,” with a,“ high rate of serious complications”.(1) Since that time, the leading medical associations have ‘endorsed’ gender affirming surgery. Mallon was the first to challenge this ban and she won, and at the age of 74, underwent the surgery and said, “I feel congruent, like I'm finally one complete human being where my body matches my innermost feelings, my psyche... I feel complete”.(1)

Mallon discussed in an interview, how she ‘became aware’ of her gender identity as a child in the 1940′s.(1) Life happened, she got married multiple times, had children and worked for a living and it pushed back her perusing gender affirming surgery.(1) In the 1970′s and early 80′s she was able to afford the surgery but wasn’t able to get a doctors approval, primarily because of her relationships with women, but when she finally got the go-ahead she no longer had the funds.(1)

The time in which she grew up in didn’t have a path paved for the gender-variant. She knew at a young age she identified as female/feminine and at age 12 in 1952, when she learned about ‘reassignment’ surgery, she knew she wanted gender affirming surgery. But, she attempted multiple times to, in her words, “man up”.(1) She joined football, the army, police force, but never felt comfortable in any aspect of her life where she had to present as a man.(1)

It was only into her 40′s that she began to live openly as a women.(1) She began taking fashion classes and diving into transgender activism. “ I lived what transsexuals call the stealth life, didn't disclose the fact that I was originally male... And in 2012, I came out of stealth mode and started being more of an activist."(1) In her interviews she seemed open, strong, and fun. Although it was very clear that Mallon was pleased with her ability to fight the insurance system and get access to care for herself, she also seemed equally pleased with the “door [she] opened”.(1)

References:

1. Leitsinger, Miranda. "Sex Reassignment Surgery at 74: Medicare Win Opens Door for Transgender Seniors - NBC News." NBC News. January 3, 2015. http://www.nbcnews.com/news/us-news/sex-reassignment-surgery-74-medicare-win-opens-door-transgender-seniors-n276986.

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Post Four: Cases of Note Continued...

What Happened In This Case & Why Is It Important

Rhiannon G. O’Donnabhain v. Commissioner Of Internal Revenue

Rhiannon O’Donnabhain, grew up Irish Catholic in Boston and for many years tried to conform to her assigned male gender, by enrolling in the US Cost guard during the war in Vietnam, and gaining employment as a construction worker. In 1996, she began seeking treatment and was diagnosed with gender identity disorder or GID. She underwent therapy as well as implimenting a hormone treatment under a doctors supervision, as well as legally changing her name and living day to day life as a woman.(1)

As a progression of her treatment, she underwent gender affirming surgery in 2001 and on that years tax returns she listed $25,000 in medical tax deductions for her transition care. The IRS initially gave a refund of $5,679 to O’Donnabhain, however, after an audit the IRS claimed that the medical deductions listed could not be claimed as medical, but as cosmetic, making the $25,000 non-deductible. The IRS demanded the refund back and O’Donnabhain took the IRS to tax court.(1)

The arguments the IRS made questioned the validity of GID, the comprehensiveness of O’Donnabhain’s treatment plan (hormones, gender affirming surgery), her “Real-Life” experience living as a women and the steps she took to legalize it, as well as questioning the legality of claiming these costs as ‘medical expenses’. The Tax Court reversed the IRS’s demand for the return to be given back.(1) The IRS has since said that it will uphold this decision and make future internal rulings based on this decision.

Something makes its way into the tax code, your getting somewhere.

There are three reasons why this decision is important. The first being more socially constructed. The Courts decision to recognize gender affirming surgery as tax deductible reinforces to the public that this is not ‘cosmetic’, frivolous or a waste. This is an open acknowledgment that transition care is medical care, and that makes an impact on the public’s psyche.

The second reason, is because of how this will impact the gender-variant community. There is an uncertainty as to whether or not insurance will cover transition care, and it is for this reason that so many people seeking transitional care have to pay out of pocket. This can get pricey, quick. With this case as precedent, other people who are able to afford transitional care now know that they can claim that money out of pocket as tax deductible under medical expenses. This will have a direct impact on those paying for their transitional care.

This decision is also important because each time a United States Court decides that gender affirming surgery is not ‘cosmetic’ or ‘elective’ it weakens the arguments that healthcare insurers have for their discriminatory policies. This is a long term strategy, but the more precedence there is for gender affirming care being categorized as medical, the weaker the insurance companies arguments for exclusionary policies become.

References:

1. Rhiannon G. O’Donnabhain v. Commissioner of Internal Revenue. February, 2, 2010. https://scholar.google.com/scholar_case?case=10659090151547398752&q=O%27Donnabhain+v.+Commissioner&hl=en&as_sdt=400006&as_vis=1.

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Third Post: Cases of Note

What Happened In This Case & Why Is it Important?

Victoria L. Davidson, Plaintiff, v. Aetna Life & Casualty Insurance Co., Defendant.

Victoria L. Davidson, formerly known as Henry Dee Sampler was employed by Oxford Chemicals in Georgia, and during that time of employment was treated for ‘gender dysphoria’. During the years 1975-1976, Victoria was officially diagnosed, was taking hormone treatments, and was cleared by a physician for gender reaffirming surgery, all of which was to be billed to Oxford Chemicals(1). Oxford Chemicals insurer, Aetna Life & Casualty Insurance Company, cited this clause in Victoria’s insurance as grounds to deny coverage:

"Cosmetic Surgery-Any of the listed expenses incurred in connection with cosmetic surgery will be considered Covered Medical Expenses only if the cosmetic surgery is necessary for the repair of a non-occupational injury which occurs while the family member is covered for this benefit" (1)

The insurers argued that ‘gender dysphoria was not an injury, that gender reaffirming surgery was cosmetic, and that, “ "surgical intervention is not necessary and is unreasonable”(1).

The court examined not only the physical/cosmetic changes involved with gender affirming surgery, but also examined how this surgery acts as a final step to “gender role assimilation of which the psychological and social steps already have been carried out”(1).

In 1979 the court found in favor of the plaintiff and found that the defendant Aetna Life & Casualty Insurance Co. was responsible for all medical expenses required for Victoria’s gender affirming surgeries.(1).

This case is important because of the precedence it sets. The insurers were trying to argue two ways; that gender affirming surgery was not medically necessary and it was cosmetic/elective. Prior to this case, this argument was upheld in the courts. However, the judge in this case did not just look at the procedures as they were listed, but also examined plaintiff evidence from Johns Hopkins Gender Identity Clinic, as well as psychological studies, which reiterated that, in some cases, the link between ‘gender dysphoria’ and transition surgeries were not cosmetic, but medically necessary. Although this strengthens the medical field as gate keepers to gender affirming health care, this precedence makes that care a possibility. This decision meant access to the gender variant community to healthcare for those with insurance. Although this victory was important, insurance companies learned from this case and changed tactics, adding in clauses that specifically excluded transitional health care coverage. This meant that the next battle would be in making, outright, this exclusionary and discriminatory policy illegal.

References:

1. Victoria L. Davidson V. Aetna Life & Casualty Insurance Co.. 2016.  https://scholar.google.com/scholar_case?case=10255452008398656183&hl=en&as_sdt=400006&as_vis=1. pg 1-6. 

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Second Post: An Overview, Access to Healthcare Historically (Pre-Affordable Care Act)

How did insurance handle transgender care?

The short answer to this question is, horribly if at all. Insurers are most invested in their own companies survival and financial self interest. For this reason, “the insurability of a health condition depends not just on whether the condition is the result of an unpredictable illness, but also on whether treating the condition serves a socially beneficial purpose important enough to mandate insurance coverage of the treatment”(1). There are three different ways that insurers denied access to healthcare that I will expand on below. Insurance providers are able to deny transition coverage because being transgender, “doesn’t provide sympathy like other health conditions,” nor does it raise national concern, and therefore insurance companies can deem transition care as ‘medically unnecessary’ without political backlash. Financially, insurers see transition care as costly and multifaceted (1). For these reasons Insurers have been able to deny coverage without any real repercussions.

What did insurers use to deny coverage?

Insurers primarily denied coverage on the grounds of pre-existing conditions, exclusions for cosmetic and experimental procedures, and deeming treatment not medically necessary.

Pre-Existing Conditions: A pre-existing condition is a medical condition that started before a persons healthcare went into effect. Being transgender according to insurance companies was a long-term condition, one that a person would have received care for (or should have) before being insured, meaning that insurers do not have to cover transition related care. “A pre-existing condition is no longer a health risk to be insured against, but a definite occurrence that may or may not require treatment”(1). Therefore, transition related care is not a financial inevitability that insurers were willing to provide.

Exclusions for Cosmetic and Experimental Procedures: In order to control costs, insurers have framed gender-confirming care as cosmetic or experimental and therefore not insurable. Cosmetically procedures are labeled as such because they are ‘optional or elective’, and the label of experimental intervention is usually believed to have ‘questionable medical value’ (1). Although the courts deemed that this label was not properly used in relation to transition care, insurers then added footnotes into contracts that explicitly denied transition care.

Not Medically Necessary: A review process is conducted for non-standard medical care to deem if the care is considered medically necessary, although this is usually for cosmetic or experimental procedures it is another method of rejecting transition care. This term has played a large role in Medicaid programs across the country, and most states had restrictions against transition-related interventions (for at least some part of transition care, i.e gender affirming surgeries).

References:

1. Khan, Liza. "Transgender Health at the Crossroads: Legal Norms, Insurance Markets, and the Threat of Healthcare Reform." Yale Journal of Health Policy, Law, and Ethics Yale Journal of Health Policy, Law, and Ethics, 2011.

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Post 1 Introduction: Health Care In Crisis

The healthcare insurance industry has both exclusionary and harmful rules/regulations that negativity impact the transgender communities ability to access care. For research purposes I am going to focus solely on the transgender community, although some aspects of this research can be related to the gender variant community as a whole. This topic is significant because everyone at some point must come into contact with the healthcare system, and transgender individuals in particular have healthcare needs that are not being covered by insurance, making them inaccessible to the majority. After attending UIC’s Transgender Healthcare Panel, I realized that their was a very real gap in how a cisgender and a gender variant person accesses their health insurance, and I realized I wanted to learn more about that gap and why it exists.