You need the entire global village to support LGBTQ+ cancer care

Dr Shail Maingi, how much has been done for cancer patients/survivors in sexual minority communities in the US and globally? What are the challenges?

Dr Maingi: The challenges are that LGBTQ people are often invisible because they experience discrimination and violence so many choose not to disclose their identity in many settings. And so when people have to live with the stress of not being themselves and have to hide, there is minority stress. Coupled with this is there is actual discrimination, societal rejection and job loss. So, despite the stereotype of a rich gay man, there are actually higher levels of LGBTQ+ people living below the poverty line which creates its own barriers to having a healthy life.

And, there are specific cancer risks that can happen that are at an increased rate, like breast cancer, lung cancer, uterine cancer, and HPV- mediated oral, cervical and anal cancers. In the US it is documented that these cancers are experienced by LGBTQ people at higher rates.

In the US, there was some data and although the data wasn’t perfect, it showed that LGBTQ Americans live 10 years less long. Based on that and on other studies showing higher rates of LGBTQ people dying from HIV, higher rates of smoking and smoking related illness and several other health disparities, it became clear that sexual and gender minorities/LGBTQ people face unique health risks and poor health outcomes. In the US on a national level , we have health disparities groups so that people in need can’t be excluded from research, so that the needs of certain people that maybe would not be included in a big study are looked at, and so that we elevate the health care

of everybody, and not leaving people behind.

And thus sexual gender minorities became a health disparities group in the National Health Institution (NHI) and National Cancer Institute (NCI). In 2016 the American Society of Clinical Oncology (ASCO) wrote a policy statement acknowledging there are real cancer-related disparities, and offering general approaches to improve things like including people in research, not leaving people behind, collecting sexual orientation, gender identity

Dr Jyoti Bajpai

(SOGI) data, changing policies to support patient rights and inclusive workplaces and things like that. Thus oncology and LGBTQ populations in the US became a thing in 2016.

And since then there’s been funding and research. Communities have been observing that the lesbian women and bi women are dying of ovarian cancers, but the scientists couldn’t see that because there was no data. Now we have national databases that collect sexual orientation and gender identity data and we are able to

demonstrate large-scale disparities. And that is just one of the important findings that has been made.

Not every database or clinical record collects SOGI data and there is discrimination that’s real. We know discrimination is happening in the US and around the world, and so that means in the US is that one state in may collect the information and one state may not. One hospital may collect and one hospital may not. regardless the professional society, ASCO, and national hospital accreditation recommendations to be a high quality hospital is you should be collecting this information.

But then there’s the problem of how do you teach people to collect it and how do you teach people to collect it respectfully? And globally these issues are very similar with varying levels of commitment, knowledge and safety about collecting, storing and using SOGI data meaningfully. Therefore, the cancer efforts for LGBTQ health disparities is in some ways in its infancy.

Dr Jyoti Bajpai, where is India and the SAARC region on this challenge?
Dr Bajpai: I believe it’s very relevant. The care for LGBTQ plus populations with cancer is really patchy world over and as we heard there are disparities globally but more in this part of the world I would say, because we are having challenges even with other populations with cancer. For instance, we have challenges with even our adolescent young adult population, geriatrics or people with special needs. So like any other challenging situations, this particular situation is extremely challenging.

We don’t even have incidence data, there is a lot of stigma and people do not come forward. There is no system in oncology clinics to ask about gender orientation.

I conducted a large survey in the SAARC region before and I didn’t find any information. When I came across a patient who had breast cancer and when she divulged that she is having a different orientation, that she was on hormone replacement therapy, I tried to look up the data and I practically found nothing.

Then I was a discussant in the European Society of Medical Oncology for a patient who was a transgender and developed prostate cancer. So these two opportunities made me read up and find something for this population. I became very interested and then I tried to connect with global experts to find out how I can intervene, do my bit to help the cause.

I did a large survey of the SAARC region.The data was really alarming because among the treating oncologists or treating physicians who are dealing with cancers, we found that only 19 per cent are comfortable in providing care to LGBTQ plus population with cancer, of whom only 5 per cent were confident that they can provide good care.

Only 1 per cent said that they are asking about gender orientation, their preferences etc. Hence I feel that what we are seeing is not even the tip of the iceberg. As people are now more comfortable, I have tried to reach out to many NGOs who are working in the space like Humsafar Trust , Kinnar Maa Trust, Indian Cancer Society, Nargis Dutt Foundation who came forward to help.

This started while I was affiliated with Tata Memorial Hospital where I was a professor for 15 plus years. I had a connection with the preventive oncology department, my collaborator Dr. Gauravi Mishra. When I discussed this thought process, she was interested, and she said we can work together on this.

Now I have joined the Apollo Group of Hospitals, and the Apollo management is also fully supporting this very important cause. Tata Memorial Hospital too is on board, with director Tata Memorial Dr Sudeep Gupta, also supporting the cause

I think together we need to craft the path. This is unknown territory and we really need to take small steps. I am very glad that I am with Dr. Maingi who is the world leader, as well as other leaders like Dr. Alison Mayburner, Dr. Mariam Lasberg, Winette van der Graaf, medical oncologist, who leads research on adolescent and young adult (AYA) cancer in the Netherlands and is now President, European Organisation for Research and Treatment of Cancer (EORTC). They came forward, saying that in their way they can support the cause. With that kind of global collaboration, we can make progress in this field. I believe you need the entire (global) village to come forward to support the cause.

From a physiological/ medical/clinical perspective, how is the progress of cancer different in the sexual minority community?
Dr Maingi: Because LGBTQ+ populations are just now being studied, there is a lot more research and things that we have to do to truly understand the extent, causes and potential solutions for the gaps in cancer care. What we do know is that some cancers have an increased incidence and sometimes we understand why, for example, because of higher rates of obesity in the US as a minority stress coping mechanism for some trans people and also for lesbian and bisexual women.

We also know that smoking rates are higher, HPV mediated cancers like oropharyngeal, anal cancers, cervical cancers are higher based on behavior. We also know LGBTQ people may be reluctant to seek care because of previous bad experiences in medical settings based on their identity. Medical mistrust is real, impacts the clinical encounter once people do seek care. Research that I presented at ASCO last year showed that the majority of LGBTQ people with cancer are afraid of discrimination by their oncology team and that their loved ones and support networks are often excluded and even disrespected. This makes people feel more vulnerable and less supported as they face cancer. As far as prevention for HIV- and/or

HPV- related cancers, LGBTQ people may be having their first sexual encounters when they’re young, without any peers and so they’re not getting a lot of education and so they’re more vulnerable to STIs. That’s part of it how things are different.

Another part of it is that you’re having people who come to you presenting with later stages because their doctors do not see them as different or aren’t offering them the screening. So whatever discrimination is happening is also happening in the clinic space. And that’s delaying care.

Once the cancer is found problems continue. If you have two people who have abnormal mammograms, both at the same stage but one cisgender and straight, heterosexual, when you compare the data, that person is cisgender and heterosexual is getting their cancer care sooner and having a better outcome within the same medical establishments. Part of it may be the impact of medical mistrust where people don’t necessarily, automatically trust us or think that our advice includes LBT people so maybe they’re not taking their endocrine therapy, their tamoxifen or aromatase inhibitor, but right now, we don’t really know. We do not understand why but need to in order to make cancer care more equitable.

Then there’s fundamental clinical questions for screening. If somebody’s trans, female, but they kept their prostate, because that would be the usual surgery, is that person excluded from insurance or able to be diagnosed with prostate cancer? In the US, a trans woman could be diagnosed with prostate cancer and the insurance wouldn’t cover it. That has been addressed with the Affordable Care Act, but who knows what will happen going forward? Because if they’re living safely now, they’re not presenting as male, it may not occur to their doctor to screen for prostate cancer. And since that person does not know about their risk of prostate cancer they may see no value in disclosing their transgender identity to a doctor or medical institution that never asks / acknowledges that trans people exist.

These are some of the clinical challenges. But there is also the fact that certain chemotherapy drugs are dosed based on someone’s gender, a drug called carboplatin. So if someone’s transgender, then what dose do you use? If someone has a cancer that is not hormone mediated, like for instance, lung cancer, do they need to stop their hormones? Is it right for us to always stop the gender-affirming hormones especially given the lack of evidence? Because it has been the practice of providers to stop hormones which often alienates patients.

Another example is if a non- binary person or transgender male is facing breast cancer and wants a mastectomy, people think it’s for gender affirming, not because of breast cancer, and they send the people to psychiatry and the patient’s care gets delayed, or the patient feels stigmatised and doesn’t come back. Thus there are multiple levels of problems, some of which is biology, but a lot of it is the clinical encounter and how we treat people.

What are the first steps any cancer care provider like Apollo or the other larger hospital groups in India, should take to meet the unmet cancer care needs of this community? If you were to lay out a roadmap?

Dr Maingi: I think there’s so much that can be done. There’s an existing curriculum, existing resources in the US and ESMO that can be shared. There can be training.

But visiting community sites that provide HIV care that have a large LGBTQ population, showing an interest in expanding their services from doing HIV care to then mental health care, and now they’re doing drug rehab. Now let’s have them do cancer care as well because they’re starting to be the primary care for people.

If we go to these centres, show interest and take responsibility to minimise delays in care and diagnosis for LGBTQ+ people it will make a huge difference. I am not sure cancer centers can wait until there is a diagnosis and that’s when I’ll see you, but instead partner with local LGBTQ+ community organisations and help people get the diagnosis because the government hospital, the primary care doctors are maybe distracted or feel unsafe and are delaying things. Treat people with respect. Maybe develop patient navigation.

Have policies against discrimination. Have policies

where patients can have visitors that are their family members, so some family member who’s rejected them isn’t being called to make a decision. Allow people, if they are dying from cancer, to have a dignified, safe place where they can be their true self. And ensure that trans people can be buried with the identity that they need, that feels right to them because it’s a significant source of distress. There’s so many things that can be done.

I think here there’s an opportunity, one, to partner with communities here in India because the community organisations have done a wonderful job. Partner with Apollo, which can show what this model can look like. But also, there’s unique things about India. And so partner with researchers and educators like me in the US but take the existing curriculums,

make them more cancer- specific, but make them India- specific.

In America, they like to pretend that trans people don’t exist. Here, there’s a cultural heritage and you have 10 times more people reporting in. At least one study in 2021 studied identifying as trans in India versus in America. So 0.3% in America, 3% here. So because there’s a cultural acceptance in history and then protection from the government, there’s more opportunity to maybe do some of this research, figure out the right dose, advance care, come up with standards. India can be a world leader in this area.

Dr Bajpai, I think the Apollo Group is ready to take those first steps. Can you tell us some more about it?

Dr Bajpai: I believe that a good beginning is half done. I’m very

glad that at this juncture, I’m able to convince people that this is really a need. Initially, when I started talking about this with my colleagues, my friends, my different collaborators, they asked why? Is it really needed? That part is over.There is an elephant in the room whether we want to recognise it or not. We have successfully navigated that part.

And I believe, especially the way I’m seeing the leadership’s interest, and this Apollo Cancer Conclave was a kind of milestone because everybody came together. We had a close group meeting wherein all the stakeholders from different NGOs, leadership, colleges, patients, government and patient survivors, were present. And that shows an intent that we will move together in this space and make a difference.

I think the future is looking bright. Apollo is all set to start this clinic. We want to give this loud and clear message to everyone that this will be a safe space. And because we don’t want to discriminate in any way, this will not be a separate clinic. We are providing care under our own clinic, more empathetically. We are trying to develop cultural competence, taking lessons from the Western world, what is already being done. And my colleague and friend and collaborator, Dr Maingi will be pivotal to help on this.

We want to be tailor-made to local needs. We don’t need to reinvent the wheel for every aspect. We want to take the best of both and whatever is being already done, we will make our foundation on that.

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