Many people – ourselves included – have expressed confusion, irritation, and disappointment at the lack of substantive change in the rules that govern Medicaid coverage for low-income trans people following our 10-year struggle to end the blanket ban on trans healthcare.
Mik Kinkead and I, two of SRLP’s legal advocates, have gone through the regulation to break down how we think trans and gender nonconforming people should be able to access our health care needs at this point. Click here to read our suggestions on navigating the new regulations.
We are incredibly grateful for the work of our former staff attorneys along with Legal Aid Society, Willkie Farr and Gallagher, and some incredibly strong individuals who stood with us as named plaintiffs and told their stories. We are also grateful for our former organizers and our coalition partners Trans Justice of the Audre Lorde Project, GLOBE: the LGBTQ Justice Organization of Make the Road New York, and GLAAD. Without them, we would still be struggling to end a state ban on trans people’s most basic healthcare needs.
SRLP, Legal Aid, and Willkie Farr filed a federal class action lawsuit in June 2014. In December 2014, after months of legal back-and-forth, the State agreed to amend the regulations.
As of March 11, 2015, the State agreed to cover some aspects of trans-related care. This regulation is known as 18 NYCRR §505.2(l). The regulation includes some hormones and surgeries, but specifically excludes life-affirming surgeries deemed “cosmetic,” many of which are sought by trans women (see the end of this page for more details). Additionally, while the State has produced the necessary guidance that assists health care providers, pharmacists, and Medicaid billers in understanding the new regulation, no substantive trainings have been offered. Without this, all of us are somewhat in the dark about how these regulations really work, and thousands of trans New Yorkers are still being denied necessary health care.
When the law changes from above it can take months or years for people who actually work within the system to be informed of the change, let alone implement the new regulation and follow it correctly. Everyone should be able to receive necessary health care without teaching their provider, the billers, or the pharmacists about their healthcare needs or rights. But that is still not a reality. SRLP will be working hard with our coalition partners in the coming months to train medical providers and benefits administrators and to disseminate information.
At this time we recommend that anyone trying to work on these issues with their Medicaid provider, biller, or pharmacist be kind to themselves during and after. Facing transphobia, racism, misogyny, HIV panic and classism is painful and traumatic, though we know it is still a reality for many of us trying to meet our basic healthcare needs.
We cannot afford to wait for the State to provide training and education to our providers.. We need trans healthcare now.
Understanding the new Medicaid regulations in New York
According to the amendment, Medicaid will cover some health care needs if a person has a diagnosis of “Gender Dysphoria” also sometimes known as GD or GID. This can be provided by a licensed mental health professional. Getting a mental health diagnosis to access health care can cause a lot of difficult feelings to arise. You may want to think of it as just a check-list – you do need the diagnosis to get your health care needs met, but the diagnosis does not define you.
Under the new regulation, once you have a GID or GD diagnosis you can access:
- Hormone Replacement Therapy (HRT) Medicaid will provide you with this only if you are 18 years old or older. According to our knowledge of the regulations, you do not need anything other than a diagnosis of GD to access HRT. Medicaid should be covering your hormones although some community members are still having problems accessing hormones through their pharmacies. If this happens, please contact SRLP. We will not be able to individually represent people, but we can provide you with referrals and next-steps to take.
- If you are between 18-20 you can access any surgery that won’t result in sterilization. Sterilization means that you will not be able to provide your own sperm or egg (that has not been previously frozen) in order to have children as a result of the surgery.
- If you are 21 years or older you can access surgeries even if they might cause sterilization.
What Surgeries Does it Cover?
The regulation does not name what surgeries it does cover. SRLP has worked with a group of advocates and we believe the regulation covers the following surgeries :
- Genital surgeries for trans women and trans men including electrolysis of the genital region
- Chest surgery for trans men
- Other “medically necessary” surgeries that are not specifically denied in the regulation
What do you need to Access these Surgeries?
- A letter from a New York State licensed psychiatrist or psychologist with whom you have an established and ongoing relationship (meaning you will keep seeing this person after surgery)
- A letter from a New York State licensed health professional such as a psychiatrist, psychologist, physician or licensed clinical social worker acting within the scope of their practice. This individual must have independently assessed you and referred you for surgery.
- Together, the letters must establish that:
- you have a persistent and well-documented case of GD
- you have lived for 12 months in a gender that aligns with your identity;
- any medical or mental health care conditions you may have are being cared for and will not get in the way of any surgeries;
- you have received mental health counseling (as deemed medically necessary by a professional) during the 12 month time period you have received hormone therapy that is appropriate for your goals. The State requires 12 months for any genital-related surgery, but allows that the required 12 months of hormone therapy to be waived if it is medically “contraindicated” or if you are otherwise unable to take hormones; and
- you are able to make a fully informed decision and consent to the treatment.
At this time, Medicaid is not paying for:
- anything relating to the storage of reproductive tissue, such as freezing sperm or eggs for later use;
- any surgery-specific operations relating to a transition from a transition; and
- surgeries the State deems are “solely directed at improving an individual’s appearance.”
- surgeries that tighten or remove excess skin;
- breast, brow, and forehead lifts;
- implants in the calf, cheek, chin, nose, or pectorals;
- collagen injections;
- electrolysis (unless required for a vaginolasty);
- drugs related to hair growth or hair loss and hair transplants;
- facial bone reconstruction, reduction, or sculpting;
- lip reduction;
- thyroid chrondoplasty (reduction of the Adam’s apple);
- voice therapy, lessons, or surgeries related to the voice; and
- breast augmentation (there is a minor exception allowing breast augmentation if you have been consistently on hormones for two years and have not had any growth in the breast area).
If you are a current client of SRLP, we are happy to work with your medical care provider to produce letters that fulfill these requirements. If you are not a client, then please feel free to contact us via email email@example.com or our Legal Intake Line at 212-337-8550 ext. 308. We may not be able to take you on as a client, but we can meet with you and provide a referral.
This fight is not over. These regulations do not provide the necessary and important medical care we need, and it leaves important individuals such as youth out of care all together. That is unacceptable. The legal battle will continue.
We continue to be deeply grateful to the plaintiffs and all trans and gender non-conforming people on Medicaid who have lived these realities, fought back, and found creative solutions in order to thrive and survive.