What are your main barriers to treatment?

[sarahcsc]

Hi all,

I am invited to attend a clinical governance meeting next week to discuss the issue of transgenderism within our community.

It is a meeting with healthcare providers to discuss current public health issues.

I believe this is a good opportunity for the issue of transgenderism to gain traction, and perhaps they would pay more attention to a fellow doctor with gender dysphoria.

New Zealand is proud to be a country with one the best human rights records in the world. It is also one of the few countries which allow the "X gender" to be stated on its passports.

If I am not mistaken, New Zealand publicly funds up to 5 gender reassignment surgeries per year, and there are very few dedicated gender dysphoria clinics in the country.

I am very fortunate to be able to be open and honest about my sexual identity in such a country (as opposed to Saudi Arabia) but I feel there is a lot of room for improvement especially in terms of increasing public awareness, funding, and education among clinicians.

I want to know what are your main barriers to treatment (if any), what services are already available in your local community (if any), and how would you improve this aspect of healthcare if possible.

I feel there is something we could learn from other countries so we could either emulate their success or avoid their mistakes.

WARNING: Due to personal grievances, this topic may be emotionally charged. Please keep this topic as objective and civilised as possible. Please refrain from disputing the stories of others (i.e. "my community of xxx is very supportive", "Liar! I lived in the same community xxx and they sucked!). Just stick to the facts of your experience.

WARNING: Please refrain from generalizing or speaking on behalf of someone else (i.e. "everywhere is the same...", "a friend of mine had trouble..."), I am only interested in your local community and your personal story.

WARNING: Please do not disclose too much personal information and avoid graphic descriptions.

I will read the replies patiently and come back to everybody as soon as I can. :)

Love,
S

[PretzelGirl]

I am involved in healthcare education in my area and because I am not a wordy typer, I will bullet some thoughts.

1. Some people get insurance rejections for needed services aligned with their physical body but opposite of their gender of record. For example a transman getting a Pap Smear or a transwomen getting a Prostate screening.

2. I have seen some that can't even get HRT or Therapy paid for by insurance.

3. The next level is those that can't get FFS or GCS paid by insurance.

4. Our youth that can't get hormone blockers paid for (they are seriously expensive).

5. Last, is the education for providers so that they can actually handle us appropriately medically and have cultural competencies when working with us.

[jamielynn_ca]

The biggest barrier to services I'm aware of in the US is physicians trained in transgender healthcare. Some thoughts:
- many physicians received their mental health training before 2012/2013 when being transgender was removed from DSM as a mental disorder (APA DSM-V). Therefore their knowledge of us is both old and minimal. Anecdote: I was on a trans (patient) panel recently at a medical school where resident physicians were taking a trans health seminar, and had to remind the doctors on 2 occasions based on their questions that I never "chose" to be transgender; I "chose" to transition.
- replacing required therapist letters with informed consent for HRT- starting to catch on in the US, though most physicians still require 3 months therapy and a letter, even though we don't have a mental disorder.
- access to specialists is a gate for many - so more GPs / primary care physicians / family practice physicians could be trained to supervise HRT. This isn't rocket science, you don't really need an endocrinologist or specialist, just a ally doctor who understands the regimen, risks and what to monitor.

[update - new entry]
- access to mental health professionals who take insurance. Of the few in ATL that specialize in gender, it's hard to get appointments without a several month lead time unless you are willing to pay cash for those that don't take insurance.

Hope this helps!

disclaimer:
[for the record this is my personal experience in Atlanta where I participate in outreach and education, with my therapist who provided me a very SHORT list of MDs who do HRT, my physician who prefers a clearance letter but permits informed consent, and who is a GP/family practice physician who treats transgender patients but is not on that "list"].

[Georgette_USA]

Sue

Won't argue with what you said on Insurance, but some of that is changing. Some states are requiring that on the state health plans. I was able to do most of that in 1974-77, but had to pay for it all myself. Was able to get 50% of the SRS and follow up HRT on the Psychological part of Insurance. That is what some complain about Medical and Health needs in US. Sure would be nice if Insurance paid for all kinds of things.

Not sure on your first, but was able to get Prostate exams, but my physical and gender record is female. Not sure what someone in their accounting thought of that.

[Rianna Humble]

Please remember that the OP requested personal experience only
WARNING: Please refrain from generalizing or speaking on behalf of someone else (i.e. "everywhere is the same...", "a friend of mine had trouble..."), I am only interested in your local community and your personal story.
Although your reply may be intended to be generally helpful, if the OP requests it, I will remove any that do not relate to personal experience.

[PaulaQ]

Since I lead a local trans support group, I'm relating both experiences I've had personally, as well as those of people I've helped to find treatment who were stuck.

1. Cost. Although HRT is cheap, all the stuff you have to do here in Dallas to get it (therapist, labs, doctor visit) is expensive, and I have seen MANY trans people here face long delays for treatment because they simply can't handle all those startup costs. (I'd say this averages about $700 - $1000 locally, between labs, doctor visits, and therapists.) As for surgeries, or even hair removal - pfft - forget about it. Many of the trans women I know will likely never be able to afford those things without insurance. (Laser hair removal for MtF's is probably the most common option beyond HRT that those who are better off can afford.) Almost no one here has health insurance that is trans inclusive. It is difficult to find a policy in this state that offers trans inclusive benefits. (By the way, even if you have such a policy, my personal experience is the first line of people who'll look at your claim just reflexively say "NO WE DON'T COVER THAT," even when your policy actually DOES cover it.) And that only really applies to those who are employed in occupations that offer benefits like health insurance. A great many of us locally do not. There are options for low cost HRT, but the waiting list is 6-9 months long. There are other options if you are also HIV+ and trans. I hope this qualifies for the "local community" part of the story - and while this wasn't the gating item for me - I have money and insurance, I have worked closely with the clinic that provides low cost trans healthcare, and helped MANY people get through the waiting list. (The clinic isn't free, by the way - but it costs ~$130 for labs, doctor visit, therapist plus whatever the prescribed HRT regimen costs. This is within the reach of far more trans people than any of the other local options.)

2. Lack of practitioners. There are roughly 20 doctors in the area who'll prescribe HRT. There are TWO doctors locally who'll do any type of trans related surgery (FFS, GCS, etc.) There are a dozen or so gender therapists in the area. Finding any of these, out of the thousands of practitioners in the area is exceedingly difficult. If insurance covered treatment for more of us, we'd quickly overwhelm the providers we have. Just calling someone your insurance company will recommend to you is almost guaranteed to fail - as soon as you use the word "transgender", many docs in Dallas just hang up on you - "we don't handle that." I've spoken at the UT Southwestern Medical School, and there was nothing at the time in their current curriculum about care for transgender patients. So not only do we not have enough providers now, we aren't doing much to make new ones, either. I've run into this issue, myself, when I was starting.

3. Lack of information. Finding practitioners is just incredibly difficult.

[sarahcsc]

Thank you everybody for your input, please keep writing. :)

Can anybody shed light on how much it would roughly cost for the following:

1. Gender reassignment surgery
2. FFS
3. Breast augmentation / breast reduction
4. Gender therapy or couples therapy
5. Laser hair removal
6. Endocrinologist appointments + HRT

Please also include travel expenses if you had to travel overseas to have a procedure done.

Please also mention cost of other things that I have left out.

Please pm me if you don't want the information to be public.

Thanks,
S

[Angela Campbell]

Short answer......everything. It will cost everything you have financially and socially and emotionally.


My costs financially.

Therapy. .... $80 per week 6 months $1900
Dr for hormones with ins $20 per visit. ....ongoing rest of my life
hormones $80 month until srs $8 mo after
ffs $10,000
Name change $1500
Srs $17,000
electrolysis $11,000 so far
loss of kids, home, job

many pay much more than i did

[stefan37]

Therapy $2400
Electrolysis $24,000 still need maintenance
Hormones $50/ month
FFS $22,500
GCS $21,500
Name change $500
Loss of marriage. Incalculable

Barriers
Financial cost
Insurance hurdles
Lack of medical practitioners

[LeaP]

The responses above are all excellent. Let me add some color from my own experience:

1) I did not have an availability problem for any type of provider prior to moving to where I live now. I have yet to find either a local therapist, trans knowledgeable primary care physician, or Endo. That's a problem in itself, of course. Until I sold my house (finally!… it took over two years) I traveled periodically on my relocation budget and could schedule seeing my original providers around that. That's gone. One looming threat, should I not find new providers, is the loss of prescriptions. While I can get around that in a number of ways, it is hardly the right way to do it.

2) One reason finding a therapist has been difficult is that many, perhaps most therapists tick off the transgender and gender issues boxes on the various directories – even though they have exactly no training, knowledge, or patient experience. I can't tell you how much time I wasted making calls and interviewing.

3) Specialized directories are often out of date. The area where I live now has an organization that claims to be a transgender health care consortium. I've contacted everyone on it. Broken links. Closed offices. People who have moved to other regions. Some sympathetic folks with little to no experience, however willing they might be. Only deals with students. Not taking new patients. It goes on and on.

4) Many providers either do not take insurance at all, and/or work in a practice area where insurance rate structures are higher. A therapist has a critical role in the end to end medical treatment of trans patients, particularly HRT and transition. Yet my co-pays for a therapist are twice what they are for a physician and are subject to limits besides. Most surgeons of interest to trans patients do not take insurance at all, at least in the US. Or they are effectively prevented from submitting claims, even if they are affiliated with any carriers, by the coverage limitations of the presenting patients.

5) My flexible spending plan has rules which prevent submitting for reimbursement against some trans related care. I can submit co-pays, for example, but co-pays are obviously only applicable to medically covered services. I can't submit for non-covered services or items except in certain categories.

6) Tax treatment in the US is far from settled, either at the state or federal level. Individual cases have been allowed deductions, but the rulings are not applicable to others by yet other rules. This is changing at the federal level, but the individual is at risk - and will have out-of-pocket expenses - in challenging. The state? Forget it. I have yet to be able to claim a single trans-care related deduction.

7) Navigating insurance claims submissions for optimizing financial impact takes some sophistication. As with all medical claims, coding is CRITICAL. The right codes have to be submitted in the right sequence, with the right modifiers, with the right supporting documentation (when required). Fortunately, my wife has been a medical coder. Detecting the claims issues has been a non-problem. But this has been a time sink for me with the provider and carrier follow-up, resubmissions, etc. You cannot count on your provider to either code or follow-up properly! One surgical practice analysis done by my wife revealed that appx. 30% of claims were mis-coded. In some cases, overworked coders fighting carrier deadlines were tossing surgical reports in the trash! My biggest issues have been code sequencing. Blood tests are an example. If a non-covered test is coded first (primary), the entire claim has been rejected. And if included as a secondary, I've had it trigger a secondary audit of the primary. Endless calls and delays. Ambiguity on how much is ultimately covered and how (e.g., deductibles, co-pays, etc.). And I've been up against deadlines for the providers to submit bills to collection that I've lost count.

8) My insurance now covers SRS. Yay! But WHY ONLY SRS? I called the company's insurance rep (contact provided by my diversity rep). He provided me with a copy of the carrier's Clinical Policy Bulletin. This document, which rationalizes and summarizes the carrier's view on the medical treatment of trans people, contains a laundry list of cites and commentary in getting to THEIR view of what is medically necessary. To say that the document is out of date is an understatement. How do I challenge that? *I can't.* Someone with the proper "standing" can. WPATH perhaps. My physician could. But to do so would take an extended commitment answering the cited research and bringing things up-to-date. (I asked my physician. She can't take that on.) In the meantime:

9) I can submit claims in one-off fashion (rather than challenging the policy coverage per se) by asking for a personalized medical necessity exception. As most providers don't deal with insurance, I would also have to ask for an exemption for in-network level coverage for an out-of-network provider on the basis of network inadequacy. To do this requires the physician to describe the procedures AND CODING, then represent the claim to the carrier as required. No luck on THAT front. See coding and time commitment comments above. (Yes, this is personal experience.)

10) One reason that coverage is typically so limited is that it proceeds from not only a non-trans perspective and a non-specialist perspective, but carries a hidden MtF cultural bias. I raised this in discussions over coverage both internally at work as well as with the carrier - to no effect whatsoever. I think the general public barely believes in FtM transsexuals and is, moreover, obsessed with the notion of "sex change." THAT is the heart of the bias. Ask yourself which population avails itself the least of SRS? Who needs chest-related surgery most as a CRITICAL transition procedure? Etc. Plus, even most MtF transitioners reportedly don't undergo SRS! The whole SRS emphasis is sort of weird from a trans point of view.

11) Timing and frequency of provider visits have been a problem for me. A big one with electrolysis. I've been trying to work in a couple of hours per week for a long time. While I've mostly managed well-enough, it introduces certain risks at work. My alternatives? All more expensive. The local techs are $30/hour more at a minimum. Or I could travel periodically - the every 6 week marathon approach. All more expensive. My tech is only available Tue-Fri during working hours, with rare exceptions.

12) The lack of transition experience at my workplace translates into, among other things, total silence on a number of topics. To the point of the OP, no policies regarding medical leaves or accommodations that address transition.

All of these things represent different kinds of treatment barriers. Delays, cost issues, one-off solutions and approvals, risks of various types. Whatever your view of the root causes or even intent, it is, in the end, institutionalized discrimination.

There's more, but this is overlong as it is.

[sarahcsc]

Hi everybody,

May I know what is the waiting time (roughly) from diagnosis to treatment of any kind (i.e. gender therapy, HRT, surgery)?

Thanks,
S

[LeaP]

Got letter. Called for doctor's appt. Got appt. in a few days. Started Spiro same day.

[arbon]

Could not find a doctor so went it alone.

[stefan37]

3 months therapy before HRT letter.
4 months for Endo appt.
1 year HRT before full-time
1 year full-time before GCS referral letter
13 months full-time before GCS consult
14 months full-time before FFS
5 months after FFS to schedule GCS
2 years full-time before GCS

[pamela7]

long long waiting list just to even see a first consultant to get things moving

[Angela Campbell]

Waited about 2 weeks for therapist
on therapy about 3 months for letter for hormones
1 month wait to see doctor to get prescription
rle 1 year
wait for name change about 3 months
wait to get date for srs about 1 month

[karenpayneoregon]

Cost
1. $26,000 for GRS, travel expense from Oregon to California for hotel, food and airfare about $2,000 for a total of $29,000
2. N/A
3. $6,000 BA
4. $2,000 therapy (one year)
5. $2,000 hair removal (rough estimate as it was done 15 years ago)
6. Covered by insurance, $5.00 per month for two years.

Barriers
Financial cost: Paid out of pocket, took one year to save for GRS.
Insurance, paid only for HRT.
Doctor for trans needs, only one is 40 miles away from me who I see twice a year while my regular doctor handles non-transgender needs but has indicated he would take on the trans issues next year when he has more expertise with trans.

Wait time
My first therapist, five years ago, three visits, things got in the way so second therapist was two years ago.
So working from second therapist, after three visits she said she would approve me, call Marci Bowers and set a date. Caveat, the constraint was to see me for once a month for nine more months which ended one month prior to GRS.


Extra
My therapist is registered with our DMV, she wrote a letter to approve my name change and gender change to female prior to surgery. For those out there following this path consider asking your therapist for this option as it makes life easier with TSA.

Oregon is very good with transgender in the workplace which makes it easy to do the real life test.

[LeaP]

Sara, the context of my last reply was your time "from diagnosis." I take the formality of that as indicated in my HRT recommendation letter, as it includes the diagnosis. I was in therapy 8 months prior to its issuance, with weekly sessions at first, then every other week.

My physician, interestingly, had recorded the diagnosis after my first visit with her, about 7 months earlier. Which is the "real" one? Both. But if you adopt the coordinated care, team model, I suppose what constitutes treatment BASED on a diagnosis and what is a final diagnosis depends on the circumstances. In my case, I started therapy before seeing my doctor.

To the point of your OP, the LACK of coordinated care causes delays. In the US, there is rarely any beyond therapy and HRT, except for the few remaining clinics. Coordinated/team care all the way through transition, all providers, would go a long way toward removing insurance barriers and knowledge/education issues associated with non-affiliated handoffs.