[Queer Changemakers] How a trans doctor is fighting to make healthcare in India inclusive
Through her advocacy efforts, Dr Aqsa Shaikh is changing healthcare education and practitioners’ guidelines in India to be inclusive for trans and queer folks.
“We need to see the queer community not just as recipients of healthcare but also as providers—as doctors, nurses, caretakers, and also as teachers, researchers, and students in the medical educational space,” says Dr Aqsa Shaikh, a trans woman and a doctor who serves as Associate Professor at the Hamdard Institute of Medical Sciences and Research in Delhi.
Dr Aqsa is also a social entrepreneur and the founder of the Human Solidarity Foundation, which works on advancing the inclusion of transpersons across the healthcare value chain in India—from food security for marginalised groups to inclusion in national policy frameworks. The team also works with institutions including AIIMS, ICMR, and the Delhi Commission for Protection of Child Rights to drive necessary changes in the system.
In a conversation with SocialStory, Aqsa talks about the challenges faced by the transgender community when it comes to accessing healthcare and the underlying systemic exclusions that need to be addressed.
In the last two decades, there have been some positive signs from Indian society for the LGBTQIA+ community. The 2014, NALSA judgement from the Supreme Court recognised trans folks as the ‘third gender’ (though this terminology is problematic). The 2018 Navtej Johar verdict, also from the apex court, decriminalised same-sex relationships among consenting adults.
While these judgements and the 2019 Transgender Persons (Protection of Rights) Act exist, changes on the ground can take much longer and require consistent advocacy.
On the healthcare front, the recent orders of the Madras High Court and the Kerala High Court were in favour of the trans community and directed medical colleges to change their curriculum to remove transphobic materials. The National Medical Commission, in response to the Madras High Court, revised its curriculum in psychiatry and forensic medicine and also notified conversion therapy as ‘professional misconduct.’
In a welcome move through the Ayushman Bharat scheme, the central government launched the TG Plus Card to offer up to Rs 5 lakh per annum health cover for transgender persons, including coverage for sex reassignment surgery.
While the community hopes the proper implementation of these schemes will alleviate some of the pains, such initiatives do not yet address the deeply entrenched healthcare challenges that transpersons face.
Gender binary healthcare
All hospitals and medical education institutions follow gender binary norms. Everything—from wards, washrooms, queues, forms, to dressing rooms—is either male or female. Dr Aqsa mentions that “this separation becomes a part of your thinking system. This binary system also leads to internalised transphobia for people from the community.”
Talking about her personal experience of being a trans student in medical college, Dr Aqsa shares,
“I came to discover my identity as a trans person during medical college. Before that, I was questioning if I was a gay man or a trans woman. It was about 20 years ago when I came out as a trans woman to my parents, and some of the teachers and students at college. Their response was ‘Don’t tell, don’t talk about it, we don’t want to ask you anything,’ and this reaction made it impossible to even talk about my own trans identity.”
What is ‘normal’?
The endeavour to identify the “normal body” in medical science often becomes exclusionary and inhibits access to correct healthcare for marginalised groups. Dr Aqsa says, “I always ask medicos, in the anatomy class of MBBS college, if they ever come across a cadaver of a trans person? Or a person with disability?”
Unsurprisingly, she is yet to find a doctor or medical student who has. “Since trans and disabled bodies are not considered ‘normal,’ students end up not learning about them,” she adds.
This exclusion also extends to medical research. In developing drugs for HIV and other STIs, transpersons and gay men are included in the trial since they are identified as high-risk groups. However, for most other research, they are excluded. “For instance, the COVID-19 vaccine trials did not have any transgender person or persons with disability in their sample because the medical fraternity treats them as a vulnerable group that needs to be protected. This protectionist approach leads to an exclusion of a group that actually needs more research attention and support,” says Dr Aqsa.
Lack of research and its impact
In addition to trans people being denied healthcare owing to societal prejudice, the lack of research has a direct impact on the healthcare being provided to transgender patients.
Here’s an example—for blood haemoglobin count, there are different normal ranges for cis-gender men and women. However, we have not yet studied what is the normal range for trans men. Since it is generally higher, it is therefore seen as abnormal. Similarly, in renal function tests of kidneys, the values are different for men and women, but what is the normal value for trans and non-binary individuals? Research-based guidelines need to be developed for these care procedures.
Dr Aqsa shares that her team was “recently at ICMR, working with them to frame guidelines for conducting ethical research on transgender persons. Because in the absence of such guidelines, they will continue to be excluded. And without research, there will always be grey areas in queer-affirmative healthcare.”
“Grey areas are essentially a lack of effort. There is a huge potential in the medical research if we make an effort to include the trans and queer communities,” she comments.
Normalising treatment of intersex children
The ‘I’ in ‘LGBTQIA+’ stands for ‘intersex.’ This is an identity for people who are born with bodies which do not fit into the male or female norms when it comes to external appearance or internal functioning. In medical education, some of the prescribed textbooks (including biology books at the high school level) refer to intersex people with terms like ‘hermaphrodites’ or ‘eunuchs,’ which are widely considered derogatory and misleading. There are over 30+ types and sub-types of intersex categories. Some of these categories, like in the case of adrenal insufficiency, may be fatal to the child and need medical or surgical intervention. However, most of these categories do not need intervention. To learn more about ‘Intersex’ head to this FAQs Sheet released by the American Psychological Association.
Many parents and doctors, acting in what they believe is the best interest of the child, operate on the infant to conform the body to the male or female “normal.” A good example would be a baby with dominantly female characteristics who has a clitoris that is larger than ‘normal’, which could appear like a small penis. Parents may go for surgery to cut the clitoris to what is considered normal size. This amounts to female genital mutilation, a grievous human rights violation.
According to the 2019 verdict of the Madurai bench of the Madras High Court, interventions that are not life-saving must not be performed on intersex children. But these practices persist.
“A central committee was formed to frame guidelines regarding this, but the committee never met in the last two years!” she exclaims. In Delhi, Dr Aqsa Shaikh, along with Dr Satendra Singh and Dr Sanjay Sharma, filed a successful petition with the Delhi Commission for Protection of Child Rights which resulted in a discontinuation of such surgeries in Delhi’s government hospitals. A nationwide ban on these procedures is much needed.
Dr Aqsa points out, “Often, these surgeries can have huge consequences on the child’s psyche. Later in life, they wonder why coitus is so painful for them? Or why they have limited fertility options? They then realise they were operated on as a child. The parents are doing it in good faith and they want the child to have a trauma-free childhood. But the concept of agency is lost on them.”
She quotes the Khalil Gibran poem “Your children are not your children, they are god’s children,” adding “what level of control parents should have regarding medical interventions on their child is an active debate.”
Another debate in trans healthcare is regarding the use of hormone blockers and other interventions that delay the onset of puberty. Dr Aqsa shares,
“Available research suggests that in the vast majority of cases, the gender that a person identifies with at the age of 10 remains the same at 18. Gender in the medical system is identified as persistent characteristics and not transient, though folks who identify as genderqueer or gender fluid might not agree. Hence, puberty delayers can help avoid dysphoria-inducing changes in the body during puberty."
On the one hand, while prolonged use of these medications for more than four or five years is not recommended, many of the secondary sexual characteristics developed during puberty are non-reversible or require continuous intervention. For instance, the growth of facial hair requires lifelong laser hair removal treatment and changes in voice during puberty will need corrective surgery to reverse. These can be very dysphoria-inducing, which leads many to suicide. Therefore, pubertal delayers are life-saving interventions in that case.
Another thing to keep in mind is that blockers are not the same as Hormone Replacement Therapy, which is a higher degree of intervention and can be performed only after a person is a consenting adult, ie. 18 years of age. This makes puberty delayers the main option available to care providers.
The World Professional Association for Transgender Health published the Standards of Care guidelines Version 8 published in September this year recommends both puberty blockers and hormone replacement therapy for trans adolescents, depending on the individual case. It can be undertaken by providing the necessary information and mental health support for the trans adolescent to make informed decisions in this regard.
Talking about the grey areas in the Indian legal framework, Dr Aqsa shares,
“In India, many endocrinologists do not give pubertal delayers because under the ‘Protection of Children from Sexual Offenses Act, 2012,’ giving hormones to a minor to bring on early maturity or puberty is an aggravated sexual offence. So, if a case is filled by a parent, then the doctor needs to justify in the court that their treatment was indeed for the child’s wellbeing.”
She concludes that further research is needed to ensure we provide the necessary, safe, and ethical care for trans adolescents.
The harms of ‘Don’t Ask, Don’t Tell’
One of the major motivations behind Dr Aqsa’s activism is a personal encounter she had with the harms of the ‘Don’t Ask, Don’t Tell’ principle being followed by medical practitioners. Doctors are uncomfortable asking questions regarding their bodies to trans patients either because they don’t consider that relevant to treating the patient or to avoid coming across as politically incorrect.
During the very early days of the pandemic, Dr Aqsa was admitted with COVID-19 to the Hamdard Medical College and Hospital where she is an associate professor. A chest X-ray was done, as is the norm, and she was diagnosed with pneumonia. She was put on two different antibiotics and went through aggressive treatment.
She mentions, “Now, I do have breast implants and they cast a shadow on the X-ray which was mistaken for pneumonia. Fortunately, the Head of the Department knew about my implants and he realised the misdiagnosis.” Another X-ray was done in a way that gave a clearer picture of the lungs. Thankfully, Dr Aqsa recovered and went on to become the first trans woman in the country to be in charge of a COVID-19 vaccination centre.
“This was a watershed moment in my journey,” she says, adding that “sometimes in the ‘Don’t ask, Don’t tell’ philosophy, we fail to ask the right questions and end up making misdiagnosis or mistreatment.”
Correct vs politically correct
Dr Aqsa mentions, “Sometimes in dignifying too much, which is not the right way of looking at it, we end up ignoring very crucial issues like providing screening and diagnostic tests for transpersons.”
Some advocates for queer rights firmly assert that ‘if you are trans woman, you are a woman. Period. You must be treated as a woman in all respects and there should be no discrimination.’ While this is a very noble thought, it may not always be the correct thing to do.
She gives the example of trans women. If a trans woman has a prostrate, it can develop prostate cancer, the screening for which is only done for men. In affirming her woman-ness, we need to be careful not to erect a new barrier for this trans woman to access correct healthcare.
Aqsa emphasises that we need to treat trans women with dignity, refer to them with their preferred pronouns, and create a safe space for them. But at the same time, we should also be asking the right questions to provide correct medical treatment.
There is a long way to go when it comes to changing the healthcare system in India to be accessible to everyone, especially those who have been historically marginalised. Changemakers like Dr Aqsa Shaikh are helping India make small, yet significant, advancements in this respect.
[The copy was updated to change "Transwoman" to "Trans woman"]
Edited by Kanishk Singh
(Disclaimer: The views and opinions expressed in this article are those of the author and do not necessarily reflect the views of YourStory.)