Informed Consent for Access to Trans Health

icath.org

This was sent to us anonymously and looks like an excellent source on informed consent to share with any medical professionals you’re working with to explain what informed consent is and what it looks like as a standard of care for trans* health. 

Lawsuit accuses South Carolina, doctors and hospitals of unnecessary surgery on infant

splcenter.org

When M.C. was born eight years ago, the newborn was not easily identifiable as a male or female.

When M.C. was just 16 months old and in the care of the South Carolina Department of Social Services, doctors and department officials decided the child should undergo sex assignment surgery to make M.C. a girl. There was no medical reason to perform this surgery, which robbed M.C. not only of his healthy genital tissue but also of the opportunity to decide what should happen to his own body.

Now 8 years old, M.C. identifies as a boy – wearing boy clothes and hairstyles – despite an irreversible surgery that has left him with female genitalia. He has announced to his school and his religious community that he has always been a boy.

The Southern Poverty Law Center filed a groundbreaking lawsuit today on behalf of M.C.’s adoptive parents, Mark and Pam Crawford. It charges that the state of South Carolina violated M.C.’s constitutional rights when doctors surgically removed his phallus while he was in foster care, potentially sterilizing him and greatly reducing, if not eliminating, his sexual function.

It also charges that the doctors committed medical malpractice by failing to obtain adequate informed consent before proceeding. The defendants told M.C.’s guardians to allow the sex assignment surgery but did not provide information regarding the surgery’s catastrophic risks, including sterilization and greatly reduced or wholly eliminated sexual function. Most important, they did not tell them that the procedure was medically unnecessary.

Today’s lawsuit is the first of its kind to be filed in the United States.

Researchers: Toddler cured of HIV

cnn.com

I realize why this is a major medical breakthrough, and I don’t mean to rain on the HIV-curing parade, but it sounds an awful lot like this child was administered high doses of drugs without the consent of the mother. Doses were being given before the baby even had an HIV diagnosis. I understand the high-risk nature of the child having contracted HIV prenatally, but consent is important. This woman had no prenatal care, which is often a symptom of being very poor. The medical community has a pretty bad history of taking children from poor women and WOC and administering things like drug tests without consent. Even though everyone is praising the early intervention at higher-than-normal doses as why the child is cured, it sounds an awful lot like a violation of this family’s rights.

Black History Month: Tuskegee Syphilis Experiment

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The Tuskegee syphilis experiment (also known as the Tuskegee syphilis study or Public Health Service syphilis study) was a clinical study conducted between 1932 and 1972 in Tuskegee, Alabama, by the U.S. Public Health Service, to study the natural progression of untreated syphilis. The Public Health Service, working with the Tuskegee Institute, began the study in 1932. Investigators enrolled in the study 399 impoverished African-American sharecroppers from Macon County, Ala., infected with syphilis. For participating in the study, the men were given free medical exams, free meals and free burial insurance. They were never told they had syphilis, nor were they ever treated for it. According to the Centers for Disease Control, the men were told they were being treated for “bad blood,” a local term used to describe several illnesses, including syphilis, anemia and fatigue. The 40-year study was controversial for reasons related to ethical standards, primarily because researchers failed to treat patients appropriately after the 1940s validation of penicillin as an effective cure for the disease. Revelation of study failures led to major changes in U.S. law and regulation on the protection of participants in clinical studies. Now studies require informed consent (with exceptions possible for U.S. Federal agencies which can be kept secret by Executive Order), communication of diagnosis, and accurate reporting of test results.

Know your history.

I personally don't want to go through lots of therapy in order to get access to T. In fact, I'd like to just start T as soon as I can with as little therapy as possible. If I NEED therapy, I'll take it, but I personally don't want to if I don't have to, and I'll take the minimal amount of sessions necessary if I do need to. Is this possible?

Zak: Yes, this is possible with clinics/doctors that operate under informed consent (in the US, at least, I don’t know about other countries). However, it is much more common for clinics or doctors to require a letter from a therapist. I know that Howard Brown in Chicago does informed consent and I’m pretty sure that Fenway Health in Boston and the Mazzoni Health Center in Philadelphia do as well. Unfortunately I don’t know of a comprehensive list of doctors or clinics that don’t require a letter from a therapist. 

If you do need a therapist’s letter, there’s nothing stopping you from only going to the minimal amount of sessions (this varies by therapist, but you can expect to see someone once a week for about 3 months on average before they’ll write your letter). If you do see a therapist, I recommend making the most out of it, considering you have to be there anyway. Therapy can be a really great opportunity to better understand yourself, and so if you have to be there, might as well get something out of it. Again, though, it is totally possible to get testosterone without a letter from a therapist and this is an option to explore particularly if you live near a major city. 

The Slippery Slope of "Informed Consent" Abortion Laws

Written by Jessica Mason Pieklo for RH Reality Check. This diary is cross-posted; commenters wishing to engage directly with the author should do so at the original post.

Abortion restrictions passed as informed consent laws represent some of the worst cynicism in the anti-choice movement, so it should come as no surprise that in their 2012 party platform Republicans enthusiastically “salute” those states that passed such laws. The salute has no real immediate effect, but the inclusion is telling of the Republican drive to consign women to second place citizens under the law.

It’s not just that Republican leadership hopes to inspire copycat bills by applauding the mandatory ultrasound laws in places like Texas and Virginia, or mandatory disclosure law in South Dakota. That much is a given. And it’s not even that Virginia Gov. Bob McDonnell’s inclusion of it in the platform smacks of narcissistic self-promotion at the expense of women’s lives. It’s that these laws, in ways unlike other forms of abortion restrictions,  return to the legal understanding of women as an inferior class of persons, in need of both constant monitoring and assistance as well as oversight and regulation. Once re-codified in the law that is a world view that is impossible to contain to the discreet category of abortion restrictions.

That these laws are all passed and under the guise of “empowerment” only underscores the game at hand. In Planned Parenthood v. Casey Justice Anthony Kennedy’s opinion defends a series of abortion restrictions including forcing doctors to show women materials with graphic pictures of aborted fetuses as part of obtaining a woman’s informed consent for an abortion even when those materials have no direction relation to the health of the woman related to the procedure. The reason Justice Kennedy found this kind of practice okay was because it furthered the state’s interest in protecting the life of the unborn.

That disconnect—that the government can mandate procedures and disclosures that do not even have to be directly related to the health of the woman—in the context of securing informed consent but in the name of protecting potential life, has all but rendered informed consent all but meaningless.

Read the rest here.

The Complexity of Informed Medical Decisions

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sarainthought replied to your post: What the heck?

I agree its a poor example, as you say. But on a big picture, as an MD, where is the line on your beliefs & your practice? Not performing or not explaining the option? The issue comes up with birth control and it makes it quite an ethical issue.

It is a complex issue. But I do side with the majority that say it is not an obligation for an OB/GYN to perform a procedure he knows how to do if he is opposed to it and it is not an emergent situation. The OB/GYN should make a good faith effort to help the patient get in touch with a physician who is willing. 

You do make a good point about explaining options, though. 

I think it is very difficult, if not impossible, for most physicians to explain an issue and ALL the options without bias. We’re human. We do have a preference. And often, that preference will direct how we present information. It is what it is. 

For example, an otherwise healthy patient has abdominal pain that the surgeon decides is due to gallstone. He would like to operate and remove the gallbladder. But prior to any procedure the physician must explain the risks and benefits to the patient. The benefit is that the pain could be resolved. The main risks of the procedure include bleeding, perforation of adjacent structures, and infection of the surgical site. 

Now, how the surgeon frames the risks is key to selling any procedure. Most, if not all, will casually mention them and say that it’s possible but it hardly ever happens. The throw in statistics about how very few of these complications actually arise due to the procedure. For this fairly typical surgery in an otherwise healthy patient, no one is going to sit there and emphasize the risks.

It’s all how you sell it. 

But often we have to sell it. Because we know it’s the best option a patient has. And we push for procedures because the numbers — the evidence — say it will offer the best outcome. 

In the end, I think it is our duty to provide a patient with as much information about the options. But I also feel that it is our duty to care for the patient and to explain what we think should be done. To me, providing all the options without any guidance whatsoever is just as bad as holding back some options. 

This is, I suppose, a shift in the practice of medicine. Fifty years ago, the decisions in medical care were very one-sided. The physician knew best. And He or she made the decision and the patient accepted it. 

Today we have this this notion of informed consent — that the patient should be informed about his or her treatment and the available options. And this, overall, is a good thing. 

We’re trying to change with the times. And I think we’re headed in the right direction. 

Okay, people crying over Cole Sprouse leaving need to calm down.

That said, he seems like a total asshole to me now. He faked everything about himself and engrained himself in a “culture” (I’m not really a part of Tumblr culture, but I know it’s an outlet for a lot of people) so he could do an anthropology experiment on mainly teenagers without their informed consent… It also shows that he doesn’t care even a little bit about his fans — he used their admiration for and interest in him to gather the information he needed, feigning an interest in connecting with them, before just ditching out with a statement informing them he doesn’t really appreciate them at all.

That said, he always seemed pretty pretentious to me, so maybe I shouldn’t be so surprised.

Regarding asexuals and consent

I originally made this post back in April, but since the subject of asexuals and consent (esp. in reference to rape culture) has been coming up again recently, I thought it might be a nice time to bring it back. I’ll hopefully write up a more detailed explanation of why I have such a problem with enthusiastic consent sometime soon. 

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When talking about people who don’t want sex but consent to it, it’s important to differentiate between:

A. People who do not want sex: they may not care for it,  but they do not have any desire not to have sex

B. People who do not want sex: it’s not just that they don’t have desire for it, but that they also have a desire not to to 

In the case of A - such as an asexual person who does not experience sexual attraction but isn’t averse to sex, it is perfectly possible to legitimately give consent, and it’s not “unhealthy”

The problem is if someone who falls under B is guilted or coerced into having sex despite actively wanting not to (and by the way, if it’s coerced, it’ not consensual), which would basically be rape.

Unfortunately, since A and B both sound the same (“people who do not want sex”), it can be unclear which situation a person is referring to, which leads to a lot of confusions and never-ending arguments. So, it’s important to establish what kind of situations one is referring to.

As far as my personal thoughts on enthusiastic consent: I don’t like it’s implication that I cannot decide for myself what I do or do not want to do, and what my own boundaries are. I am perfectly capable of deciding when I want to engage in sexual activity, and if I choose to engage in sexual activity even without attraction being present, that is my own choice and it’s really none of your business. 

Creepiness

I think that what makes so many “friend zone” men so creepy -

If they had  let the woman know about their attraction and put that right on the table in the beginning,

1) The woman could have made an informed choice to keep dealing with that man

and

2) Perhaps she may have returned his interest.

To me, the creep factor hinges to some degree on whether or not I have the option of informed choice. It’s a consent issue; when the person with ulterior motives pretends to be my platonic friend, that consent has been taken from me. It’s slimy.

I would feel invaded and “creeped upon” to spend any extended period of time around somebody who is secretly imagining me naked and keeping that fact from me, then “double-whammied” when they acted as if their failure to inform me verbally [1] of their attraction was held against me.

[1] Only verbal information and consent counts and anything that isn’t specifically yes, counts as no. 

Offering my marketing services free of charge to help promote HRT Informed Consent clinics

parkthatcar.net

Here, in Chicago, trans* individuals can gain access to hormones through a relatively simple 3-step “informed consent” process at Howard Brown Health Center. For that, we are lucky.

More and more, I’m finding accounts of trans individuals who have been held back by various gatekeepers, making them jump through hoops for months (or years) before providing them access to hormones, based on the antiquated WPATH “Standards of Care”. While the intentions of the SoC were good, they end up preventing individuals from receiving the medical attention they need. Furthermore, by adding the additional costs associated with following the SoC verbatim, transition becomes something that only the well-off can pursue.

It’s just not right.

With so many obstacles in the way, it’s no wonder that so many trans people self-medicate (which can be extremely unsafe without a doctor’s supervision) or forgo transition entirely, feeling like it’s something that is beyond their means. The fact that many insurance companies exclude coverage for transition-related costs makes the gatekeeper-ism that much more of a challenge to these vulnerable individuals.

I think we, as a community, need to highlight the existing informed consent clinics available across the US, letting those contemplating transition know that this is more attainable than they may have thought. And areas without a clinic? Raise awareness of the demand for such a clinic in that area.

By trade, I specialize in search engine marketing/digital marketing, and I’d like to offer my services to any IC clinic that can use additional local awareness, free of charge. Any clinic that might be interested in this can reach me at callmeparkermarie@gmail.com.

HRT Providers in the DFW Area

Before deciding to go to a therapist, I had a lot of issues finding information about doctors that provided HRT and took my insurance in my area. This is a list of providers in the DFW area that might help some of you out. Disclaimer: People only tend to rate doctors when they have a bad experience so you should go for whoever you want. Also, most of these reviews were found from Yahoo! or Google.

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So I dropped a post here in the middle of January talking about how I was going to a top surgery consultation and that I’d post about it later.

Um, it actually went so well I’m scheduled for surgery in a week.

I went to the Philadelphia Center for Transgender Surgery in Bala Cynwyd, PA, to meet with Dr. Sherman Leis.  He’s pretty personable, asked me a few questions about my health, reminded me I’d need to work on losing weight for my own well-being, then took a look at my chest and asked when I wanted to schedule surgery for.  My only complaint is that he didn’t warn me he was going to take pictures, but he did seem a little scatterbrained.  There are a few videos on the website if you want to get acquainted with him

My surgery is informed consent and is seriously the easiest thing I’ve ever scheduled in my life.  He actually went on a rant about how if a plastic surgeon won’t perform a surgery then he’s violating the pledge he took to help people be comfortable with themselves, especially with something as serious as gender confirmation surgery.  The only thing I have left to do is get a blood test and have it faxed over to him.

In the end we scheduled for February 12.  I’ll be having surgery at Lower Bucks Hospital and then staying the rest of that week in Dr. Leis’ clinic apartments.

(He was also nonplussed when I told him my therapist wouldn’t prescribe me hormones because he had predicted “roid rage.”  Turns out he didn’t know what roid rage is.  Never even heard the term before.  I had to explain it to him.  I’m still pretty sure he didn’t get it.)

So, yeah, thus far I definitely recommend him.  You can call their office any time if you have questions.

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