Leprosy Mailing List – March 7, 2023
Ref.: (LML) Discrimination: landmark declaration by Delhi High Court
From: Joel Almeida, Mumbai, India
Dear Pieter and colleagues,
In response to a petition from a former HD patient, The Delhi High Court has declared:
"This Court is in agreement with the Petitioner that leprosy affected persons are equal members of our society and discrimination against leprosy affected persons is clear violation of Articles 14 and 21 of the Constitution of India."
This is a landmark declaration that paves the way for greater respect towards people affected by HD, since every human being is entitled to respect simply by virtue of innate human dignity. Even better, it seems to offer a potential lever for the repeal of every law directed against persons affected by HD in India. Time will tell.
Persons affected by HD and social-minded legal professionals are doing their bit. How about health professionals and the wider public?
In the pre-sulphone era HD was feared by many. Armauer Hansen's discovery of the bacillus in February 1873 did nothing to reduce the fear. Mahatma Gandhi was only one example of the many noble individuals who demonstrated respect for those affected by HD. By the late 1950s Cochrane declared that the sulphones had "torn the mask of terror from the face of leprosy". The conspicuous nodules of unchecked lepromatous HD became steadily rarer. Brand's pioneering tendon transplants improved the prospects of physical rehabilitation. The wide spectrum of disease was well codified by Ridley and Jopling, paving the way for accurate classification and helping to remedy the indiscriminate stereotyping of all HD patients.
Uele (DRCongo), Karigiri (India) and Shandong (China) were notable for well-documented projects that rapidly reduced the incidence rate of multibacillary HD. The highly impactful approaches used there included not only diagnosing and treating LL patients but also protecting them against reinfection. The world's most rapid reduction in transmission was demonstrated in the Federated States of Micronesia using skin camps, MDT and mass administration of multiple drugs (rifampicin, ofloxacin, minocycline).
In recent years stereotyping of HD patients has returned with a vengeance. In the absence of smear microscopy, every HD patient is at risk of being depicted as a threat to contacts. This despite the concentration of viable bacilli in most patients being vanishingly small, especially in areas where active case-finding is practiced. Most children in HD colonies never show signs of HD. In endemic areas only about 15% of all new cases arise among contacts of known patients. Only a very small minority of actively detected patients are sufficiently bacillated to shed viable bacilli.
Nevertheless, in some areas under the influence of imported notions, all patients are pressed to reveal their diagnosis to others. This disrespects the patient's right to privacy. This threat to privacy exposes them to potential loss of family, education, employment, marriage prospects, housing, basic utilities, or worse. Only the better-off patients can afford to consult private physicians who help maintain privacy. Ostracised patients, especially if they show visible deformity, often gravitate to large urban centres where they typically are forced to seek alms in order to survive. The stigma of HD is further compounded by the stigma of alms-seeking.
Further, if a patient is unfortunate enough to have polar lepromatous HD, MDT may be withdrawn after only 12 doses of rifampicin. In that case those LL patients who have genetically-linked anergy to the bacilli (demonstrable by unresponsiveness to MIP vaccine) are left defenseless against reinfection. This boosts the risk of excruciatingly painful ENL episodes that drive some to the verge of suicide. It also forces the unprotected and reinfected LL patients to serve as prolific sources of concentrated viable bacilli. Unsurprisingly, HD continues to spread even in endemic areas where active case-finding is vigorous and single dose rifampicin plus BCG have been used for many years. The blame lies with defective policies, not with the hapless patients who either were largely non-infectious to begin with or sometimes highly bacillated yet abandoned to reinfection. Highly bacillated patients with anergy and reinfection are forced to serve as major sources of concentrated viable bacilli. How will HD transmission ever be stopped or the incidence rate of ENL be reduced if we allow LL patients to be reinfected after 12 months of MDT?
In contrast to HD patients, even HIV-positive patients are protected, by law, against discrimination. For example, the Indian HIV & AIDS (Prevention & Control) Act, 2017 requires the written assessment of a qualified and independent healthcare provider competent to do so that such a "protected person" poses a significant risk of transmission of HIV to other persons. Only then is any kind of discrimination tolerated, by law, in India. In HD, no such written assessment is required. Instead, even patients who yield no bacilli are routinely stigmatised as a threat to their contacts. This callous and unscientific approach is condoned or even recommended by health professionals, notably by those from wealthy countries. It is urged upon an army of peripheral health workers who, for better or worse, trust the said professionals. All this does nothing to lift the burden of suspicion and discrimination from the hapless patients.
Why are HD patients who have almost no bacilli stereotyped as a threat to contacts? Why are they pressed to reveal their diagnosis to others? Why are their contacts singled out for special attention? Could it be partly because single dose rifampicin was once viewed as a fund-raising opportunity? Even though single dose rifampicin for household contacts of patients has repeatedly produced no more than trivial (or worse) epidemiological impact in endemic areas? And even though the frequency of rifampicin-resistant mutant bacilli is greatly boosted in a missed LL patient who is erroneously given a single dose of rifampicin? And even though mono drug use represents a backward step from the mass multi-drug administration that was so impactful in FSMicronesia hot spots?
HD is not a mere fund-raising opportunity. It is a potentially devastating disease that can be defeated, as several projects show. Public health policies need to be based on scientific evidence of epidemiological impact. We live in a post-colonial world where all countries are considered to be worthy of respect. Therefore attention deserves to be focused on impactful projects even if they were developed by, and in, non-wealthy regions. As it happens, that's where the most impactful projects originated. The centre of gravity in policy making needs to shift away from the narratives of fund-raisers in wealthy countries, towards emulation of highly successful projects in endemic areas. Countries such as Brazil and India rightly seek to do what is best for their people, and are in a position to provide world-leading technical and practical advice to other countries.
Attentiveness to successful projects in endemic areas is what happened in TB, enabling effective strategies. It could usefully happen in HD too. Money chases success. Epidemiological impact is the magic wand that recruits an army of enthusiasts to a cause, and loosens purse-strings. The whole world tends to get behind winning causes. One of our main jobs is to create measurable epidemiological impact in place after place by emulating the most impactful projects of endemic areas.
Given the landmark Delhi judgment, it seems important to keep shining a bright spotlight on the unscientific stereotyping of all HD patients as being a threat to their contacts. No HD patient need be discriminated against in any way absent a written assessment from a qualified, competent professional that the individual patient poses a significant risk of transmission of HD bacilli to other persons (e.g., based on demonstration of densely packed bacilli in either nasal smears or tissue fluid from abraded skin). In the absence of such objective evidence of infectiousness, an HD patient deserves privacy of diagnosis and the same quality of respect and care as every other patient suffering from some non-infectious condition. Microscopy therefore helps not just to diagnose and classify, but also to stop unscientific and unlawful discrimination.
Meanwhile, the handful of highly bacillated patients most vulnerable to reinfection in each hot spot deserve to be identified and given long-term protection by either prolonged MDT or post-MDT chemoprophyaxis (eg fully supervised ROM - rifampicin or rifapentine + ofloxacin or moxifloxacin + minocycline or clarithromycin). Unburdening the many non-infectious patients from suspicion and discrimination can go hand in hand with the anti-microbial protection of those susceptible to reinfection. That is how transmission can be rapidly reduced at source, as suggested by the rapid decline in incidence rate of MB HD documented in Uele, Karigiri and Shandong. Otherwise HD will keep spreading in endemic areas, and new cases will continue to arise, decade after decade. It is important to plug the hole in the dam, not just to try and mop up the flood. The hole in the dam can be plugged by keeping LL patients well protected against reinfection.
Persons with HD could usefully be armed with knowledge about the spectrum of HD, the erroneous stereotyping of most HD patients as being dangerous to contacts, the importance of smear microscopy, the importance of protecting LL patients against reinfection, and (in India) the Delhi High Court's declaration about discrimination. While saluting the brave effort of the patient who moved the Delhi High Court, with partial success, it is worth asking what each of us can do to reverse the tide of baseless, unscientific and (increasingly) unlawful discrimination.
How can esteemed professionals better partner with persons affected? Wouldn't it be good for persons affected to be armed with accurate scientific information as they strive to reclaim the respect and justice to which every human being is entitled?
Wouldn't it be good for every LL patient to be protected against reinfection in endemic areas? Wouldn't it be good for HD to decline in every low-income endemic area as rapidly as it did in the then low income areas of Uele (DR Congo), Karigiri (India) and Shandong (China)? Wouldn't it be good to boost respect for the capability, expertise and measurable achievements of great colleagues in endemic areas?
Change is afoot, and it is unstoppable. Sometimes the people at the bottom of the heap make the most impact, and can help open everyone's eyes. The person who moved the Delhi High Court is a shining example. More power to them, and best wishes to all esteemed colleagues in endemic areas who are well placed to spread success by emulating the most impactful projects while striving constantly for even better outcomes and epidemiological impact.
Best,
Joel Almeida
LML - S Deepak, B Naafs, S Noto and P Schreuder
LML blog link: http://leprosymailinglist.blogspot.it/
Contact: Dr Pieter Schreuder << editorlml@gmail.com
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