CLARIN

Why Medical Breakthroughs Need More Testing Than Ever

The country's food and drug administration should be careful about rubber stamping medical products and procedures just because they're shiny and new.

A hard truth to swallow
A hard truth to swallow
Esteban Lifschitz

-OpEd-

BUENOS AIRES — At a time in history when there's more data than ever before, the challenge in healthcare these days is to identify which information to trust. Because unlike with religions, where faith suffices, science requires a formal process to reach credible conclusions. And as science evolves, things that were once considered true cease to be so because of new studies proving the contrary.

A case in point is the recommendation not to carry out the PSA (prostate-specific antigen) blood test concerning prostate cancer. Other truths have fallen by the wayside without being disproven by new evidence, like the recent ban, by Argentina's government drug agency, on the sale of products combining Glucosamine and Meloxicam, medications that had been widely prescribed for treating arthritis.

More troubling still are cases like the one the BBC reported regarding the use of stents to clear blocked arteries. The London-based news service noted how one scientific study — in recommending the use of stents — hid relent data linking the devices to an increased risk of heart attack. Another alarming report published on the website BMJ Clinical Evidence suggested that the efficacy of 50% of medical prescriptions is unknown. In other words, doctors are prescribing treatments without really knowing whether they're useful — or possibly harmful — to patients.

Doctors are prescribing treatments without really knowing whether they're useful to patients.

In addition, as physicians we do not always properly implement recommendations, as shown by the enormous amount of requests for PSA tests or Vitamin D prescriptions. These are specific examples of the gap between scientific evidence and standard practice by healthcare professionals. A study by the American Heart Association recently published in the New York Times concluded that a big proportion of coronary bypass operations and stent placements had been unjustified, needless and inappropriate.

Does all this mean that new technologies are useless? Clearly not. Historically and still now, new technologies have provided considerable improvements in terms of healthcare results. But it is a mistake to assume that new technologies are necessarily better. Tools are thus needed to identify the real innovation, relevant results, and contribution of new technologies compared to existing ones, and whether or not this difference is worthwhile or cost-effective.

In a hospital near Buenos Aires — Photo: Jorge Gobbi

Perhaps the biggest challenge is to do things in the correct order. First we need to identify unsatisfied health needs, then seek out the technologies that would meet them. It shouldn't be the other way around, with new technologies seeking contexts where they might be used, including in non-priority situations for the public.

With that in mind, we should be duly concerned about the procedures used to decide whether or not a medical product or procedure can be marketed in Argentina. First of all, there's just a single barrier in place for such products and procedures: the ANMAT food and drug agency. Not only that, but depending on where those things were previously approved, ANMAT will essentially rubber stamp them. And once authorized, people will be paying for those products and procedures often at prices that do not justify the benefits they offer.

The near future is offering us a proliferation of diagnostic methods described as "precision" diagnoses, or increasingly personalized treatments. Will these prove to be disruptive technologies in managing health problems, or more of the same?

If we really want healthcare improvements, we need systematic processes to evaluate new technologies, estimate their comparative contributions and thus reduce uncertainty in making coverage decisions.

Argentina has spent the past four years debating whether to create a National Evaluation Agency for Sanitary Technologies. But despite an apparent consensus among stake holders, including patients and pharmaceutical industry representatives, no such law has been passed.

It's time to apply a dose of skepticism to new technologies and accept that not everyone can access any treatment, nor do they need to. We must establish the true value of technologies in solving the healthcare problems of the public at large, and avoid situations (like with certain cancer drugs), where the costly treatments doctors prescribe are more beneficial to the oncologists themselves than to their patients.

Truly innovative technologies need to be properly vetted — for the benefit of everyone. It's something we all deserve.


*Lifschitz heads the specialist faculty in healthcare technologies at the University of Buenos Aires School of Medicine.

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Coronavirus

Where Lockdowns For LGBTQ Meant Moving Back In With Homophobic Relatives

The confinement experience could turn brutal for those forced to live with relatives who would not tolerate a member of the family living their sexual orientation openly as a young adult. Here are stories from urban and rural India.

At a Rainbow pride walk in Kolkata, India

Sreemanti Sengupta

Abhijith had been working as a radio jockey in the southern Indian city of Thiruvananthapuram when the COVID-19 pandemic hit in March, 2020. When the government imposed a nationwide lockdown, Abhijith returned to the rural Pathanamthitta district , where his parents live with an extended family, including uncles, cousins and grandparents.

Eighteen months later, he recalled that the experience was "unbearable" because he had to live with homophobic relatives. "Apart from the frequent reference to my sexual 'abnormality', they took me to a guruji to 'cure' me," Abhijith recalled. "He gave me something to eat, which made me throw up. The guru assured me that I was throwing up whatever 'demon' was possessing me and 'making' me gay."


Early in 2021, Abhijith travelled back to Thiruvananthapuram, where he found support from the members of the queer collective.

Inspired by their work, he also decided to work towards uplifting the queer community. "I wish no one else goes through the mental trauma I have endured," said Abhijit.

Abhijith's story of mental distress arising from family abuse turns out to be all too common among members of India's LGBTQ+ community, many of whom were trapped in their homes and removed from peer support groups during the pandemic.

Oppressive home situations

As India continues to reel from a pandemic that has claimed more lives (235,524) in three months of the second wave (April-June 2021) than in the one year before that (162,960 deaths in March 2020-March 2021), the LGBTQ community has faced myriad problems. Sexual minorities have historically suffered from mainstream prejudice and the pandemic has aggravated socio-economic inequalities, instigated family and institutionalized abuse, apart from limiting access to essential care. This has resulted in acute mental distress which has overwhelmed queer support infrastructure across the country.

Speaking to queer collective representatives across India, I learned that the heightened levels of distress in the community was due to longstanding factors that were triggered under lockdown conditions. Family members who are intolerant of marginalized sexual identities, often tagging their orientation as a "disorder" or "just a phase", have always featured among the main perpetrators of subtle and overt forms of violence towards queer, trans and homosexual people.

Calls from lesbians and trans men to prevent forced marriages during lockdowns.

Sappho For Equality, a Kolkata-based feminist organization that works for the rights of sexually marginalized women and trans men, recorded a similar trend. Early in the first wave, the organization realized that the existing helpline number was getting overwhelmed with distress calls. It added a second helpline number. The comparative figures indicate a 13-fold jump in numbers: from 290 calls in April 2019-March 20 to 3,940 calls in April 2020-May 2021.

"Most of the calls we have been getting from lesbians and trans men are urgent appeals to prevent forced marriages during lockdowns," said Shreosi, a Sappho member and peer support provider. "If they happen to resist, they are either evicted or forced to flee home. But where to house them? There aren't so many shelters, and ours is at full capacity."

Shreosi says that the nature of distress calls has also changed. "Earlier people would call in for long-term help, such as professional mental health support. But during the pandemic, it has changed to immediate requests to rescue from oppressive home situations. Often, they will speak in whispers so that the parents can't hear."

Lack of spaces

Like many of his fellow queer community members, life for Sumit P., a 30-year-old gay man from Mumbai, has taken a turn for the worse. The lockdown has led to the loss of safe spaces and prolonged residence at home.

"It has been a really difficult time since the beginning of the lockdown. I am suffering from a lot of mental stress since I cannot freely express myself at home. Even while making a call, I have to check my surroundings to see if anybody is there. If I try to go out, my family demands an explanation. I feel suffocated," he said.

The pandemic has forced some queer people to come out

Sumit is also dealing with a risk that has hit the community harder than others – unemployment and income shortage. He's opened a cafe with two other queer friends, which is now running into losses. For others, pandemic-induced job losses have forced queer persons from all over the country to return to their home states and move in with their families who've turned abusive during this long period of confinement.

Lockdowns force coming out

According to Kolkata-based physician, filmmaker and gay rights activist Tirthankar Guha Thakurata, the pandemic has forced some queer people to come out, succumbing to rising discomfort and pressure exerted by homophobic families.

"In most cases, family relations sour when a person reveals their identity. But many do not flee home. They find a breathing space or 'space out' in their workspaces. In the absence of these spaces, mental problems rose significantly," he said.

Not being able to express themselves freely in front of parents who are hostile, intolerant and often address transgender persons by their deadname or misgender them has created situations of severe distress, suicidal thoughts and self-harm.

Psychiatrist and queer feminist activist Ranjita Biswas (she/they) cites an incident. A gender-nonconforming person died under suspicious circumstances just days after leaving their peer group and going home to their birth parents. The final rites were performed with them dressed in bangles and a saree.

"When a member of our community asked their mother why she chose a saree for someone who had worn androgynous clothes all their life, she plainly said it was natural because after all, the deceased 'was her daughter,'" Biswas recalls.

The Indian queer mental health support infrastructure, already compromised with historical prejudice, is now struggling

David Talukdar/ZUMA

"Correctional" therapy

In India, queer people's access to professional mental healthcare has been "very limited," according to community members such as Ankan Biswas, India's first transgender lawyer who has been working with the Human Rights Law Network in West Bengal.

"A large majority of the psychiatrists still consider homosexuality as a disorder and practice 'correctional therapy'. It's only around the big cities that some queer-friendly psychiatrists can be found," Biswas said. "The pandemic has further widened the inequalities in access to mental health support for India's LGBTQ community."

Biswas is spending anxious days fielding an overwhelming amount of calls and rescue requests from queer members trapped in their homes, undergoing mental, verbal and even physical torture. "We don't have the space, I just tell them to wait and bear it a little longer," he said.

Medical care is dismal

Anuradha Krishnan's story, though not involving birth family, outlines how the lack of physical support spaces have affected India's queer population. Abandoned by her birth family when she came out to them as a trans woman in 2017, Anuradha Krishnan (she/they), founder of Queerythm in Kerala who is studying dentistry, had to move into an accommodation with four other persons.

Isolation triggered my depression

"I am used to talking and hanging around with friends. Isolation triggered my depression and I had to seek psychiatric help." Living in cramped quarters did not help with quarantine requirements and all of them tested positive during the first wave.

What is deeply worrying is that the Indian queer mental health support infrastructure, already compromised with historical prejudice, is now struggling, placing more and more pressure on queer collectives and peer support groups whose resources are wearing thin.

During the 10 months of the first wave of the pandemic in India in 2020, Y'all, a queer collective based in Manipur, received about 1,000 distress calls on their helpline number from LGBTQ+ individuals. In May 2021 alone, they received 450 such calls (including texts and WhatsApp messages) indicating a telling escalation in the number of queer people seeking help during the second wave.

As India's queer-friendly mental health support infrastructure continues to be tested, Y'all founder, Sadam Hanjabam, a gay man, says, "Honestly, we are struggling to handle such a large number of calls, it is so overwhelming. We are also dealing with our own anxieties. We are burning out."

Sreemanti Sengupta is a freelance writer, poet, and media studies lecturer based in Kolkata.

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