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Friday, October 11, 2013

Coming Out Day - Coming out transgender ......

Parts of this post with suggestions are taken from leading trans ally and African American activist/blogger Monica Roberts' blog and from my other blog on Wordpress from previous years but still worth revisiting

here is my short two cents on coming out:





also see from Gay Jamaica Watch: Coming out (or outed)  and Coming out tips and suggestions posted this year: HERE



With today being Coming Out Day, you'll see ceremonies and events all over the country that will be primarily focused on the LGB end of the community rainbow.  For the trans end of the spectrum, coming out has a different twist to it.  

When people come out as lesbian, bi or gay, they are still the son or daughter that their parents brought home from the hospital that day.   But when you come out as trans, it means that's akin to a death in the family.

The child they once knew will eventually be morphing into an outward gender presentation different from the one they brought home from the hospital.  Those parents will have to get used to that morphed body over time just as it took the trans person involved a certain amount of years to come to grips with the reality they are trans.

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From the moment of that declaration that we are trans, we are going from zero to femininity or masculinity and begin the process of having to navigate all the societal baggage that particular desired gender role comes with while unlearning it from the birth gender role.  

We trans people are the only part of the rainbow community that have to pay for the privilege of being ourselves. In addition to having to go through medical and surgical intervention, there's also wading through the paper trail we have piled up and changing those identity documents to reflect who we are now.

I don't want to underestimate how liberating it is for a trans person to come out to family, friends and allies.  It does wonders to lift the burden of carrying that tremendous secret off our psyches so we can begin to openly and honestly live our lives.  

But a dose of reality as you make this life changing decision, especially if you're planning to do so under the euphoric environment of National Coming Out Day.    

If you're a trans person of color, it's even tougher to come out and I understand that reticence to do so.  When we average two transwomen of color killed every month, 70% of the names we read during every  Transgender Day of Remembrance are Black and Latina, and we have the unwoman meme and disrespect hurled at us on a regular basis, it's enough to make you pause.

   

Unlike our white counterparts, we transpeople of color don't have the long established support groups or organizations that are fluent in our culture, backgrounds and needs.

We've only started getting the attention we deserved in the tail end of the last decade.  The Trans Persons of Color Coalition was founded in 2010, and we still have to fight tooth and nail just to get any kind of positive visibility or media attention for our role models and our issues.

Coming out for trans people of all ethnicities is tempered with the knowledge that we still have a long way to go to achieve trans human rights in this country   We still have a lot of education we have to do even with recalcitrant hardheads in our rainbow family and within trans circles about what being trans is. 


But as I've discovered ever since I began my own transition in 1993, my life not only began when I did so and got comfortable in my own skin, my family expanded.  We have a proud history that is still unfolding every day.  I have out and proud trans brothers and sisters all over the world now.  I have trans elders who are eager to pass down their hard won knowledge to me so I can do the same for you.   I love the fascinating journey of discovery I've been on.

And I'm proud to be an African descended #girllikeus. That outweighs whatever negatives connected with our coming out decision.

But to get to the point where I, Janet Mock, Isis King, Kylar Broadus and countless other trans brothers and transsisters are, the first step is coming out and living your life openly and honestly.   You need to not only do so for yourself when you feel comfortable and confident in yourself to do so, frankly the trans community needs you to do so as well.

The rest of being trans we can deal with one day at a time..

ENDS 

Before you come out:

I think it’s important to start with thinking about the purpose of your communication, and that is just to come out to them, to come out of hiding and let them know who you are and what you’ve been struggling with. I’m making the assumption that you also wish to remain as close as possible to your family, and be accepted and hopefully supported by them in the future.

There’s also the question of if you should come out at all. If you are dependent on your parents/family (under 18, or if they are paying for college, etc…) then you need to think of the very real possibility of their cutting you out or off. The last thing you want to be is a homeless transgendered youth. If this is the case, then it may be wiser to spend some time finding and getting support before proceeding.

If you decide that the time is right and it’s safe to come out to them then…

The Vehicle:

My experience has been with Transgendered clients, that a letter works best. The letter has several advantages over face to face communications.

You get to take your time and think about what to say and word it perfectly.

You can have a friend, therapist or supportive person read it over first and give you feedback.

You can’t be interrupted.

The recipient can go back and read it again and take their time with it.

Why a letter and not an email? Well, it’s more personal, email can be a little cold.

What to say:

I’m of the school of thought that you should just say it in your own words as clearly and plainly as possible. I think it can be good to also include the following:

Reassurance that you love them and want to remain connected and hope that they will be supportive.

Reassurance that this is not their “fault”.

A little bit about your struggle with gender over the years, your experience, coping, isolation, etc… (be specific! It will help them empathize with you)

A few recommendations of books, articles or support groups in their area and I recommend to ask them specifically not to respond right away, but to take some time (a week) before they respond. Let them sit with it. This will weed out any immediate bad response and let them cool down.

Just as you would tailor a cover letter for a job you may need to tailor your coming out letter for different family members. Your parents are two (or maybe more than two) separate people, invite them to respond individually.

What not to say:

No need to talk about specific long term plans/timetables or surgeries in your coming-out letter. Remember, the purpose of the letter is to let your family know that you are transgendered. Period. Future plans are better left for future communications. Why? Because just digesting the fact that one has a trans son/daughter/brother/sister is enough to begin with. Remember, you’ve had a lot of time to think about this and are ready to move ahead. They are just learning of this for the first time and need to absorb it. I think its ok to gently allude to the fact that changes might be coming in the future, but I wouldn’t go father than that in your first communication on this topic.

There is no need to go into the etiology of transsexualism here. There are too many conflicting theories biological and otherwise, and even if you knew the origin of your being transgender, it wouldn’t change it.

Afterwards:

If you get a positive response that’s great! Otherwise stay calm, even if you get a negative first response. Give them time.

Don’t be reactive to a negative response. Be the adult (or if you don’t feel it, just pretend). Remember the long term goal is to have them be connected to you and supportive. Keep the long term goal in mind in all your communications with them.

It does happen sometimes that parents have a very negative response and even reject you outright. This can be very hurtful and disappointing. When this happens, again, don’t be reactive no matter how you feel. Keep the long term goal in mind. It’s easy to “write them off”, but ultimately unsatisfying if you want to have your family.

A few things to do with a negative reaction:

Communicate that you are open and ready to talk when they are,

Be empathic with their difficulty in accepting/understanding/assimilating this information. Understand that they need time and may have a religious/cultural basis of understanding that can’t be overcome quickly.

Express your wish and hope that it will change over time.

Ask what you can do to help them accept this?

Other Approaches:

You know your family best, so keep that in mind when crafting your coming out communication.

Here are some other perspectives on how to come out to your family:
coming out, hormone, surgery, and other letters
http://www.videojug.com/interview/how-to-come-out-to-your-family-and-friends-as-transgender video ‘How To Come Out To Your Family And Friends As Transgender’
http://www.hrc.org/issues/3455.htm
Article ‘Coming Out to Family as Transgender’ from The Human Rights Campaign
http://www.tsroadmap.com/family/index.html
Transsexual Road Map – Family issues








How To Come Out To Your Family And Friends As Transgender

Check out the "Coming Out" tab immediately below this post for previous entries on the subject.

Peace and tolerance and a safe and cathartic coming out!!!!!!!!!!

H

Sunday, October 6, 2013

Long-acting antiretrovirals may improve survival for people with poor adherence

Produced in collaboration with hivandhepatitis.com

Long-acting antiretroviral formulations taken once-monthly or less have the potential to improve survival and quality of life for people with HIV, especially those who have difficulty achieving good adherence, but cost may be a barrier, according to a presentation at the Second IDWeek conference taking place this week in San Francisco.

Long-acting antiretroviral therapy (ART) administered as monthly or quarterly injections may be a more convenient way for some people to receive treatment, which could lead to improved adherence and in turn better viral suppression. Two such formulations, a long-acting version of rilpivirine known as TMC278-LA and the experimental HIV integrase inhibitor GSK1265744, have shown promising pharmacokinetics, safety and antiviral activity in early studies.

Eric Ross from Massachusetts General Hospital in Boston and colleagues used mathematical modelling to predict the impact of long-acting ART on survival and cost-effectiveness for people who have not taken ART before (treatment naive) in four scenarios:
Current standard of care using daily oral antiretrovirals, starting with a regimen based on an NNRTI (non-nucleoside reverse transcriptase inhibitor), moving on to protease inhibitors and finally to integrase inhibitors and salvage regimens.

Late long-acting ART starting after multiple treatment failures.
Second-line long-acting ART starting after first-line NNRTI failure.
First-line long-acting ART used as an initial regimen.

The model assumed a hypothetical cohort of previously untreated people with HIV based on demographic, CD4 cell count and adherence data from published studies. Most (84%) were men, the mean age was 43 years, the baseline CD4 count was 320 cells/mm3 and they maintained 89% adherence on average. The analysis assumed that viral suppression rose linearly with increasing adherence when using daily ART, but that both adherence and suppression remained consistently high when using long-acting injections.

The researchers projected changes in CD4 count, viral load and retention in care over a lifetime. They looked at life expectancy, quality-adjusted life years (QALYs) and cost estimates based on 2012 US price data:

Average first-line regimen: USD$24,000/year.
Boosted protease inhibitor regimen: USD$28,000/year.
Integrase inhibitor regimen: USD$39,000/year.
Integrase inhibitor salvage regimen: USD$40,000/year.
Long-acting ART regimen: USD$53,000/year.

Importantly, they estimated that long-acting ART would cost 85% more than boosted protease inhibitor regimens, based on historical information about relative costs of novel long-acting formulations of drugs for other diseases.

Cost-effectiveness was determined by calculating whether the incremental cost per QALY gained was above or below USD$100,000, a commonly used threshold in the US.

Compared with a life expectancy of 23.0 years after ART initiation for people taking daily therapy, the model predicted that those using long-acting formulations would increase their survival by several months: 23.5 years with late long-acting ART, 23.6 with second-line long-acting ART and 23.7 with first-line long-acting ART.

Lifetime costs for long-acting ART under the late, second-line, and first-line scenarios were USD$420,000, USD$490,000 and USD$670,000, respectively, compared with USD$400,000 for current daily regimens.

Late long-acting ART after multiple treatment failures was found to be cost-effective, coming in under the threshold at USD$90,000 per QALY. Second-line long-acting ART was ten-fold more expensive at USD$980,000 per QALY. The cost of starting long-acting ART as first-line therapy was an exorbitant USD$6,190,000 per QALY.

But the cost picture improved when the model took into account adherence. Amongst individuals with very high adherence to daily regimens (as seen in some clinical trial populations), long-acting ART did not significantly improve survival, so it was not cost-effective under any scenario. People with poor adherence to daily therapy, however, could see enough improvement in life expectancy that long-acting ART became feasible.

The researchers calculated that the cost of long-acting ART would have to drop into the $27,000 to $34,000 per year range to become cost-effective for second-line therapy – close to the current price of boosted protease inhibitor regimens.

"Long-acting ART has the potential to improve survival of HIV patients, especially those with barriers to adherence," the investigators concluded. "With a high cost, long-acting ART will be good value when used selectively in poorly adherent patients with multiple failures. With a cost near that of currently available regimens, long-acting ART could be cost-effective as second-line therapy."

The researchers stressed that because survival benefits of long-acting ART could be negligible for highly adherent patient groups, future studies of this strategy "may underestimate its value" if they do not include individuals with barriers to adherence.

They also noted that this model did not incorporate the potential impact of long-acting ART on reducing the risk of HIV transmission, which would likely improve its value.

The historical 85% cost increase for novel long-acting drug formulations is perhaps the most flexible factor in this model. If advocates succeed in demanding lower prices, or if national health programs refuse to pay such a high premium, long-acting ART could become cost-effective for more people.

MORE HERE



Background:

Long-acting antiretroviral formulations (LA-ART), currently in development, aim to achieve monthly or quarterly ART dosing; this could improve health benefits of ART for HIV-infected individuals who have difficulty maintaining daily adherence. We sought to identify the clinical and economic circumstances under which differing clinical roles of LA-ART might be cost-effective in the US.

Methods:

We used a microsimulation model of HIV disease progression (CEPAC-US) to project the impact of 3 potential roles of LA-ART (compared to daily ART only): 1) initial therapy for all ART-naïve patients, 2) 2nd-line therapy for those failing 1st-line, and 3) use for patients with multiple prior failures on NNRTI- and PI-based regimens. Model outcomes include quality-adjusted life-years (QALYs), lifetime cost, and incremental cost-effectiveness ratio (ICER); strategies with ICER < $100,000/QALY are designated “cost-effective”. We simulate a cohort with mean adherence (medication possession ratio) of 89% (SD = 22%). Depending on adherence, HIV RNA < 400c/mL at 48 weeks on daily ART ranges from 0 to 91%, and loss to follow-up ranges from 41 to 4/100PY. We assume LA-ART's efficacy is 91% regardless of adherence to daily ART, and that LA-ART costs $60,000/patient-year (vs. $28,000 for daily PI-based regimens). In sensitivity analysis, we vary LA-ART's cost, efficacy, and quality of life (QOL) impact (due to benefits of reduced pill burden or detrimental side effects).

Results:

In the base case, LA-ART increases overall life expectancy (LE) compared to daily ART by 0.5-0.6 years, and LE of patients with the lowest adherence by 2.3-3.0 years, depending on clinical role; only LA-ART for patients with multiple failures is cost-effective ($86,000/QALY, Table). With a cost of $30,000/year and a favorable QOL impact, 2nd-line LA-ART is cost-effective ($94,000/QALY); varying efficacy of LA-ART has minimal impact on cost-effectiveness results.

Conclusion:

LA-ART could improve survival of US HIV patients, especially those with barriers to adherence and poor outcomes on daily ART. With a high cost, it will be a good value for use in patients with multiple prior failures; a cost close to current regimens combined with demonstrable QOL benefit would support broader use.