“Where Would I Begin?” Reflections on the Historic filing of the Crawford Case

The historic litigation in the case of M.C. has profound significance for many in the intersex community. Advocates for Informed Choice (AIC) is publishing a series of personal responses to the M.C. litigation. The first in this series is by longtime intersex activist and former AIC staff member Jim Ambrose (formerly Jim Bruce). This piece originally appeared on AIC’s blog, June 5, 2013.

“M.C. will spend the rest of his life paying for his caretakers’ actions.” – Erica K. Landau, Huffington Post

Where would I begin? I asked myself that question every other hour after AIC asked me to submit my reaction to the filing of the Crawford case. Hell, I’m asking it right now. I worked for AIC from 2009 to February, 2013 so I knew this case was coming for a while. That said I had a feeling it wouldn’t get filed, that it’d slip away or rather be taken away. I wasn’t alone in feeling that simply filing the lawsuit, just filing it, would be monumental. Looking back it was kind of like when an 8 year-old thinks Christmas is an oasis (7 months away!), too far off to comprehend day-to-day and so the kid resigns himself to childhood drudgery. Because, come on, nothing exists that far in the future least of all everything you ever wanted.

But, on the morning of May 14, 2013 The Southern Poverty Law Center (SPLC) and Advocates for Informed Choice issued a press release detailing how a group of professional adults irreparably harmed a child in South Carolina. I gazed at my laptop as a press conference took place right in front of some giant brick courthouse. Attorneys representing a child called M.C. stood in a semi-circle behind a podium, and there was Anne! Anne, who will argue breathlessly that ‘They Might Be Giants’ was the greatest band of the 20thcentury, was right there on the Primetime Live at 5 Eyewitness News! Ever-measured Anne gently explained what she knows she can prove: That what happened to M.C. was unnecessary, arrogant and brutal.

You see, for me, the most difficult aspect of intersex advocacy is making this complex issue understood by any audience. Intersex stuff is nothing but sprawl. It gets everywhere: sex, genitals, going to the bathroom, hormones, clothing, fitting in, not fitting in, showering, sports, inclusion/exclusion, sex again, interpersonal connection, how we all sleep at night, self-determination, the opportunities we give ourselves and take from others and contentment. You know, the basics. These items are hardly approachable because most educated folks often fail to even understand the difference between sex and gender. So tell me how a kid is to know what a numerator is if they struggle to count to 10?

So, then two of the bravest people I may ever know did something most intersex advocates (myself included) thought could never happen. They stood in front of cameras, on record, in their son’s hometown and demanded justice. Pam and Mark Crawford denounced the needless removal of their son’s genitals and reproductive organs as “a careless and reckless action,” and that the State of South Carolina “disfigured (M.C.) because they could not accept him for who he was.” When I glanced down to watch the seconds peel away on the web clip I noticed my hands and knees were trembling. No. I was shaking all over. That’s when I realized Pam bears a passing resemblance to my own mother. My mother has that red hair, those sturdy-yet-stylish eyeglasses, and a voice that tells a careful listener suffering is something you do alone.

The thing is M.C. and I (along with many intersex people) share a similar childhood narrative. We both endured early years of ghastly cosmetic genital surgery, the loss of our reproductive organs and silence. But, M.C. was adopted by the Crawford family. I never saw the inside of an orphanage. M.C. has a sense of self and of his safety. My sense of self was gray, disoriented. I did not feel safe. M.C. has a voice that he uses. I had a voice too, but if I’d shared that voice with my parents I would have told them I was lost. M.C. used his voice to inform his family that he is a boy.

Pam projected her voice. I can hear it as I type: “The adults involved are sending him the message that your body is not acceptable and has to change in order for you to be loved.” I know how true those words are. I, and many intersex advocates, have articulated versions of them to those in power for the past 20 years. But, hey, why should highly-educated clinicians listen to a handful of surgical ingrates? History tells us that appeals for mercy through testimonials of truth and suffering have never been enough to effect institutional change. Those words from a proud and committed mother of an intersex kiddo in front of most of the world are not an appeal for mercy. They are a shot across the bow.

Pam’s unshakeable words found a spot in me I thought I’d grieved out. Out and away. I’d say it was unbearable save for the fact that I knew thousands of other intersex people were witnessing the Crawfords’ demonstration of love and belief in their son. I shared May 14, 2013 with many people, especially the ones no longer with us. And, frankly that experience reminds me how alone I was for so long, how alive I am now and, finally that resilience brings liberation to those residing on the right side of history.

Jim Ambrose is a worker bee at The Interface Project. #justice4mc

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Identification of LGBT Needs in the Exam Room

A physician performs a routine checkup on a pa...

A physician performs a routine checkup on a patient at the medical clinic. (Photo credit: Wikipedia)

Last time you were in an exam room, did you feel that the attending physician received all the information needed to gain an accurate perspective of your plight? Did you share everything you felt you should, no matter how personal? Did said physician even ask about anything, aside from the usual short list of inquiries we are all too familiar with in that particular setting?

If you are a physician, do you really get the answers you need from your patients? Or perhaps it is just too uncomfortable when talking about sexual health and behaviors. More likely, they do not disclose the details out of discomfort, or even fear.

LGBT persons have shown to have some unique healthcare needs, sometimes experiencing disparities in care. LGBT patients are often uncomfortable or inhibited from talking openly with healthcare providers about sexual orientation, gender identity, and sexual behaviors. Certain sexual behaviors do not automatically define that patient as LGBT, and not all LGBT patients are going to have similar sexual behaviors. Truthfully, it’s not about whether a person is a member of the LGBT community or not. It’s about the individuals choices and behaviors that could be putting their health at risk, as well as the health of others. In order to cover everyone’s needs, patients must speak openly with providers. Providers must delve into the patients behaviors and understand where the risk behavior is at for each patient. I am going to lay out a few examples, ideas, and suggestions for physicians, as well as patients.

In any healthcare position, you will find people from diverse backgrounds and lifestyles. Different interests, tastes, and mindset. The right approach will reassure patients that the provider is knowledgeable, genuine, concerned, confidential and accepting. This enables the patient to open up and discuss the very private matters of sexual behavior, often in this society a ‘taboo’ subject.

Ask the patient to tell a bit about themselves. As the patient, make sure you indulge your sexual partner(s), safe sex practices, and concerns. Some behaviors have an amount of risk attached to them that is often unknown to the patient.  A physician might ask “Do you have any questions or concerns about your sexuality, sexual orientation or sexual desires?”. Use gender-neutral terms and mirror the patient’s terminology to better understand how they identify. For example, asking “do you have a partner or spouse?” “Are you currently in a relationship?” “What do you call your partner?” are all good ways to decide how the patient will identify without offending them with clinical terms which may sound cold and ‘labeled’. From here the in-depth sexual questions begin: “Are you sexually active?” “When you have sex, do you have sex with men, women or both?” “Are you and your partner monogamous?” “How many sexual partners have you had in the past year?” “Do you have vaginal sex, anal sex, or both?”. These and many more are the key to finding out just what unique needs your particular patient might have.

It is important to differentiate between sexual identity and sexual behavior. Providers need to discuss sexual behavior with patients regardless of sexual identity in order to define risk-assessment, ascertaining what activities they engage in and to learn what they are doing to prevent the transmission of disease.

And for the majority of readers, as  patients we have a personal responsibility to find the courage to openly discuss in confidence all of our behaviors and desires with our doctors, nurses, therapists and counselors, etc. This is extremely important. We cannot rely on someone to read our thoughts and know the truth.

Stand up and be proud of yourself. I can almost guarantee that the person treating you has heard it all. And if they haven’t, they will soon enough.

A (No Longer) Quiet Revolution: Intersex Awareness Day

By Jim Bruce, Communications & Youth Coordinator for Advocates for Informed Choice

October 26 is International Intersex Awareness Day.

This day marks our calendars because one of the first intersex advocacy groups, The Intersex Society of North America (operating as “Hermaphrodites with Attitude”), picketed the American Association of Pediatrics annual conference in Boston on October 26th, 1996. The picketers were angry that doctors attending the conference continued to recommend normalizing cosmetic surgeries on the genitals of intersex kids. Many of those protesting had been subjected to those kinds of damaging and irreversible surgeries when they were infants. As brave as these individuals were, their appeals for reason and restraint went largely unheard by the medical community that day. Many medical policymakers thought then- and many still believe today- that these protesters experienced “old surgical methods” and that “surgical procedures are better now” and “overall patient treatment is vastly improved.”

That was then, this is now.

And things have changed.

Today, Advocates for Informed Choice (AIC)  proudly announces the landmark publication of “What We Wish Our Doctors Knew”, a brochure written and produced by the first youth leadership development program of its kind: Inter/Act . Inter/Act is a space for young people with intersex conditions or DSDs (differences of sex development)  to come together from all over the world to express themselves, uniting their individual stories to develop a voice for a new generation. Inter/Act was created to help mold tomorrow’s intersex advocates with the goal of creating greater understanding among peers, parents, doctors, scholars, and supporters about the varied experiences and perspectives of young people with different bodies.

Now, for the first time, young people born with intersex conditions have a platform. This program helps them to speak directly to their doctors about how they experience treatment. Inter/Act allows young people a safe place to voice the complicated emotions of that come with an intersex condition. They can express their concerns, encouragement, fear, hope and anger- something those protesters in Boston were unable to do. For these reasons alone “What We Wish Our Doctors Knew” is revolutionary. AIC and Inter/Act believe this document will serve to advance the dialogue between young people, parents, medical providers and activists, and we’re sharing it with you. Please pass it on!

Finally, AIC simply can’t sit still, so we’re thrilled to unveil our newest program, The Interface Project (TIP)! TIP’s mission is to gather and share personal stories of people living with an intersex condition or DSD to spread the message, “No Body Is Shameful.” We have done some work to get the first videos (http://www.youtube.com/theinterfaceproject) produced but there is more to be done! With your help  we will continue to bring you powerful stories of people with intersex conditions in their own words.

Now you know some of the significance of October 26. Please help AIC and other organizations worldwide increase the visibility of a community that has been unseen for far too long.

Jim Bruce is the Communications & Youth Coordinator for Advocates for Informed Choice. A Louisiana native, Jim now lives in Missoula, Montana. 

For more information on Advocates for Informed Choice, Inter/Act , The Interface Project, or, if you would like a copy of “What We Wish Our Doctors Knew” (http://aiclegal.files.wordpress.com/2012/10/interact_ms-updated.pdf) email Jim Bruce at jim@aiclegal.org.

Analysis: Why some people do not receive continuous HIV medical care

by Chris Morley

Only 42% of the people diagnosed with HIV in the USA receive continuous HIV medical care after their diagnosis (seeing their HIV doctor at least every six months), according the the first national study in the USA.

  • 28% had a gap of at least one year between HIV medical check ups
  • 31% let 7-12 months pass between their appointments.

Who are the people missing care some of the time and what are their reasons? What are the consequences and what might be done to reduce the harm?

Over 17,000 adults attending 12 clinics within the HIV Research Network across the country, were surveyed by the Perelman School of Medicine, Pennsylvania, who reported their findings in the online journal AIDS in March 2012. This summary is based on a report in Medical News Today.

Why continuous HIV care is better

  • People with HIV whose health is regularly monitored and treated are less likely to become sick
  • People receiving continuous treatment are far less infectious and this very significantly reduces the spread of HIV
  • Regular attendance cuts total health costs by preventing serious health problems from developing that require expensive hospital treatment.

So regular, frequent HIV care means better longer term health for the person with HIV, fewer new people becoming infected, and lowers HIV health costs.

Who’s more likely to attend regularly for HIV care?

  • Patients who begin treatment on Medicare, not private insurance
  • Older patients
  • Men infected through sex with men
  • White patients
  • Women
  • People with very low CD4 counts (or an AIDS diagnosis) on starting care.

Sometimes missing care

So we may assume that the people more likely to have gaps in their care (of over 6 months) will broadly be the mirror image:

  • People with private insurance
  • People without healthcare insurance
  • Younger people, including those infected by mother to baby transmission
  • People infected through Injecting Drug Use
  • Heterosexually infected people, most especially Heterosexual Men
  • African Americans, Hispanic people, Native Americans, other ethnic minorities and migrants

At risk of missing HIV care

The researchers themselves suggest that HIV healthcare providers should treat the following people as at risk of not attending as regularly as they should:

  • Symptomless people, who may think they are well enough to skip appointments
  • People with depression, anxiety, or with difficulties accepting their diagnosis, or with other mental health conditions
  • People using substances (alcohol, drugs)
  • People with practical difficulties in their lives: poverty or debts, long working hours or low wages, unable to take time off, poorly housed, with childcare responsibilities, with travel problems
  • People with other health conditions and disabilities
  • People who move home or district, especially if this is often
  • People who have changed doctors
  • People jailed, or otherwise institutionalised.

Future work

The study authors suggest standard criteria should be developed to decide the  appropriate gaps between appointments for people in different circumstances. Some people will need personalised care plans based on the stage of their HIV illness, and their particular social circumstances.

More studies are needed to pinpoint the times when some people are more likely to fail to appear for appointments, and to identify what works to ensure people do attend every time.

Using insurance records data may help track people through changing situations and help establish which are the patterns that lead to increased risk of missing continuous HIV medical care.

Other research and experience in other countries

With 68% of the people with HIV in this US study not attending for HIV check-ups and care at least once in every six months, the USA appears to have one of the worst national HIV care regular attendance records in the developed world. This is the first national USA study of HIV care attendance but other countries have been tracking HIV healthcare non-attendance for some years.

The USA can therefore benefit from using other countries’ experience to  help  understand better what is happening, and consider adopting solutions that have already been found to reduce the numbers missing HIV  appointments.

For example, in Northern France, 13% disappeared for at least 12 months immediately after their diagnosis, and over half of those returned after an average lapse of 19 months; but almost half of those returnees by then had a dangerously low CD4 count of under 200, and another one quarter returned and were then given an AIDS diagnosis.

3/4 of those who dropped out suffered serious health and life expectancy consequences. There was a more-than-fivefold increase in the chance of dying in the year after return, compared with people who had stayed in care.

Suggested ACTIONS for healthcare and clinical staff

  • Tell people, when giving the positive test result, that coming to ALL your appointments and taking treatment as recommended, keeps most people well, with a near normal life expectancy. That it is really important to come, even when you feel very well and have no symptoms.
  • AND the people who miss their appointments are five times more likely to die within the next 12 months than those who keep their appointments.
  • Do everything you can to obtain a wide range of ways to contact people, and permission to use all these, with discretion.
  • Send SMS text reminders a day or so before the appointment.
  • Quickly and rigorously follow up all people who don’t attend.
  • Strongly encourage people newly diagnosed to become an active user of a community HIV project as soon as possible. This is because contact with and seeing other people like themselves who are living well with HIV is immensely reassuring and supportive and also improves mental and physical well-being. It counters the  stigma and isolation of living with HIV. It provides a safe space to talk about HIV. The clinic’s messages will be  reinforced by what other people living with HIV and community volunteers and staff say. Clinic staff giving a positive diagnosis must understand that most people getting their HIV diagnosis will remember only fragments of the important information they are told by the clinic. The shock of diagnosis means many mishear and misinterpret the limited amount they do remember.

In London, UK, where free HIV treatment for all is provided through the National Health Service, a study at London’s King’s College Hospital found that 40% of the patients seen at least once between 1995 and 2005, were not seen at all during 2006. Crosschecks with the national anonymised HIV database held by the Health Protection Agency, found half (20%) were using another HIV clinic, a small number had died, but more than 1 in 5 (over 20%) of all their patients were completely missing from  HIV care throughout the snapshot year of 2006.

Compare that 20% missing with the 68% missing in the USA.

There are a wide range of studies from British and other countries’ HIV clinics using different measures, finding various levels of loss, a variety of common causes, and making a range of suggestions for action. A 20% attrition rate is about average.

Some hospitals are clearly better at retaining patients than others; some HIV clinics have many people with complex problems and needs; in the bigger cities where there is a choice of HIV treatment centres, there is some ‘churn’, people going to another hospital without telling the first, because they have moved or wanted a change.

There is a wealth of detailed information, exploration of the reasons people disappear, and suggestions for ways to reduce the loss of people from HIV care, in this detailed report of experiences in London and Manchester, UK

Lost to care: the mystery of the disappearing patients in HIV Treatment Update.

This is the most thorough resource available, incorporating lessons from a range of European studies. Reading and acting on the various findings is recommended.

Other useful papers 

Reaching Lost to Care Populations Clinical Infectious Diseases 2006, full text free online.

High rate of loss to clinical follow up among African HIV-infected patients attending a London clinic: a retrospective analysis of a clinical cohort. Journal of Int AIDS Soc. 2010, abstract.

Many Black, HIV-Infected Women in Mississippi Are Lost to Care After Giving Birth Interview with Aadai Rana MD The Body, 2008, with weblinks to two other resources 8

Differences and disadvantages in the USA

There are a number of reasons why it is more likely many people will miss HIV care appointments in the USA than in other countries. These help explain why only 42% of US people with HIV attend HIV clinic at least once every six months. This low rate of regular attendance means that HIV clinics in the USA must work very much harder to reduce the 68% of no shows.

  • US health care is often excellent but without doubt the most expensive in the world. Large numbers of people have no health insurance, or inadequate health insurance; there are problems accessing and with  inadequate funding for the public healthcare programs, Medicare and Medicaid.
  • HIV is an expensive healthcare condition to treat.
  • Co-infections and other co-morbidities are common, compounding treatment complexity, treatment adherence, and increasing health costs.
  • Distances to HIV treatment centres and travel difficulties may be considerable.
  • HIV stigma and discrimination seems particularly rife in many parts of the USA. There are no international data comparisons available yet, although the international HIV Stigma Index will help answer this need. Lambda Legal carried out a USA HIV stigma survey within US healthcare in 2009 and publish a factsheet detailing discrimination and stigma in HIV healthcare and elsewhere.

These and possibly other factors contribute significantly to the high rate of missed HIV appointments and loss to HIV care in the USA.

~Chris Morley is a community HIV policy and practice expert based in NW England. He researched and co-authored for the UK’s HIV Treatment Update: Lost to care: the mystery of the disappearing patients.

He’s worked on a wide range of English national and regional HIV policy and practice issues including

  • making free HIV treatment available to all migrants
  • ending the prosecution of people living with HIV for HIV transmission
  • promoting the use of HIV treatment as part of the HIV prevention toolkit
  • developing support for gay men living with HIV on using HIV treatment to prevent onward transmission
  • making gay men’s HIV prevention work friendly and relevant to gay men living with HIV
  • combating HIV stigma and discrimination
  • supporting teenagers and children living with HIV in the care system
  • readying adult HIV services for older teenagers to transfer
  • developing services for older people living with HIV

New Microbicide May Block HIV From Entering Cells

H I V

More good news on the HIV research front.

From Science Daily:

University of Utah researchers have discovered a new class of compounds that stick to the sugary coating of the AIDS virus and inhibit it from infecting cells — an early step toward a new treatment to prevent sexual transmission of the virus. 

Development and laboratory testing of the potential new microbicide to prevent human immunodeficiency virus infection is outlined in a study set for online publication in the journal Molecular Pharmaceutics.

…”Most of the anti-HIV drugs in clinical trials target the machinery involved in viral replication,” says the study’s senior author, Patrick F. Kiser, associate professor of bioengineering and adjunct associate professor of pharmaceutics and pharmaceutical chemistry at the University of Utah.

“There is a gap in the HIV treatment pipeline for cost-effective and mass-producible viral entry inhibitors that can inactivate the virus before it has a chance to interact with target cells,” he says.

As scientists learn more about how HIV attaches to CD4 cells, there will be more and possibly less problematic ways to treat and prevent HIV infection.

Full story here.

Gonorrhea: Not So Easy To Kill Anymore

Not anymore. . .

Think if you get the clap, you can just go get a shot or take a pill to be cured?

Not so fast, bucko. There’s now another reason to protect yourself:

Today, the Centers for Disease Control and Prevention (CDC) outlined laboratory trends from 2000-2010 that show growing resistance of gonorrhea to antimicrobials.  Gonorrhea, a sexually transmitted disease (STD), is a major cause of pelvic inflammatory disease, ectopic pregnancy, and infertility and can facilitate HIV transmission. (Press release, National Coalition of STD Directors)

Yep. Gonorrhea. It used to be a serious disease, before antibiotics made it easy to treat. Now that we’ve been taking antibiotics for everything, resistance is setting in and we’re running out of effective drugs to cure it.

…cephalosporin antibiotics are the last line of defense for treating the disease, as the bacteria has developed resistance to all other antibiotics.  The highest level of resistance to cephalosporins, regardless of sexual partner, was found in the Western region of the United States, particularly Hawaii and California, as well as in men who have sex with men in all regions.

“This new data outlines what state and local health departments have been seeing on the ground—that highly untreatable gonorrhea is near,” stated William Smith, Executive Director of the National Coalition of STD Directors. “There are currently no new drugs in development for this infection.  If this last class of drugs fails we will have no definitive treatment options for gonorrhea.  We call on researchers, government, and partners in industry to make the development of new, effective drug treatments for gonorrhea a public health priority,” continued Smith.

This is a big deal.

It’s important for sexually active persons to be screened for all STD/STI’s at least every six months, or more often if you have many sexual partners and/or have had unprotected sex- and that includes oral- gonorrhea can easily infect the throat. And, remember, any STD/STI increases the risk of contracting/spreading HIV. From the CDC:

Untreated gonorrhea can cause serious and permanent health problems in both women and men.

In women, gonorrhea is a common cause of pelvic inflammatory disease (PID). About 750,000 women each year in the United States develop PID. The symptoms may be quite mild or can be very severe and can include abdominal pain and fever. PID can lead to internal abscesses (pus-filled “pockets” that are hard to cure) and long-lasting, chronic pelvic pain. PID can damage the fallopian tubes enough to cause infertility or increase the risk of ectopic pregnancy. Ectopic pregnancy is a life-threatening condition in which a fertilized egg grows outside the uterus, usually in a fallopian tube.

In men, gonorrhea can cause epididymitis, a painful condition of the ducts attached to the testicles that may lead to infertility if left untreated.

Gonorrhea can spread to the blood or joints. This condition can be life threatening. In addition, people with gonorrhea can more easily contract HIV, the virus that causes AIDS. HIV-infected people with gonorrhea can transmit HIV more easily to someone else than if they did not have gonorrhea. (emphasis mine)

We’ve taken the cure for granted for too long. So- be careful out there.

Full article here.