Leprosy Mailing List – November 3, 2023
Ref.: (LML) What is the system in which the work and solution of leprosy exists?
From: Joel Almeid, Mumbai, Indiia
Dear Pieter & colleagues,
Jayashree Kunju has offered an interesting opportunity to persons of goodwill who want to bring about changes for the better. As persons who experienced HD (leprosy) gain knowledge and understanding about the biology of HD, especially through collaboration with well-informed professionals, the largely spurious basis of stigma and negative discrimination will become increasingly apparent to all who inadvertently (or otherwise) promote it.
Delhi High Court declaration
In response to a petition from a former HD patient, The Delhi High Court had 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."
Unscientific stereotyping of all HD patients
By contrast, 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 practised. 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 even patients with vanishingly small numbers of bacilli 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.
Present-day life in the pre-antimicrobial era
Also, MDT may be withdrawn from anergic LL patients after only 12 doses of rifampicin even in endemic areas . As previously discussed here, those LL patients who have genetically-linked anergy to the bacilli (demonstrable by unresponsiveness to MIP vaccine) are then left defenceless 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 live in the pre-antimicrobial era for too long. They are forced to serve as prolific sources of concentrated viable bacilli. Unsurprisingly, many suffer bouts of painful ENL neuritis before being readmitted to anti-microbial protection. Predictably. HD continues to spread in endemic areas even where active case-finding is vigorous and single dose rifampicin plus BCG have been used for many years.
Under-treatment of missed LL patients
LL patients are often missed by peripheral health workers because signs of LL HD can be inconspicuous. Patients with LL HD require more than one or a few doses of bactericidal drugs in any event, and in endemic areas they require long-term protection against reinfection. Brazil leads the world in rejecting the use of single dose rifampicin. This is an important advance in favour of the people of endemic areas, because diligently implemented SDR-PEP (LPEP) in Tocantins had an unfavourable impact, and drug resistant bacilli are selected by use of a single drug in missed LL patients.
Learning from HIV
By contrast with 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 for practical purposes shed no bacilli are routinely stigmatised as a threat to their contacts. This is an unscientific approach that tends to stigmatise patients unjustly, inconsistent with our noble ideals.
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 instead of exclusion from all the things that make life secure and enjoyable for others.
Stopping HD by stopping reinfection of LL patients
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 post-MDT chemoprophylaxis (e.g. fully supervised ROM - rifampicin or rifapentine + ofloxacin or moxifloxacin + minocycline or clarithromycin) or at least prolonged MDT. 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 (multibacillary) HD documented in Uele (DR Congo), Karigiri (India) and Shandong (China) at a time of relatively low incomes. Failing such fact-based and science-based practical measures, HD will keep spreading in endemic areas for decades more. Failure then becomes a self-fulfilling prophecy, in direct contradiction of demonstrably successful projects.
Knowledge as power for HD patients
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 in the longer term, and (in India) the Delhi High Court's declaration about discrimination. The public-spirited community of legal professionals in India has repeatedly volunteered its best when asked to support the reversal of negative discrimination. Legal professionals are crucial allies in efforts to reverse unjust and unscientific stereotyping of all HD patients, and to win compensation for those patients who have developed MB HD and its adverse consequences, after having been persuaded to settle for a single dose of rifampicin.
Unshackling the grassroots
Many traditions and cultures have festivals celebrating the triumph of good over evil. India has recently celebrated the Hindu festival of Dussehra. This is a good time for all persons of goodwill to join hands with those who experience(d) HD and help reverse the tide of unscientific prejudice and unnecessarily ineffective or even harmful policies that still blight too many lives. Those professionals and other persons in endemic countries who are trying with some success to improve outcomes and impact need not be put into a straitjacket of ineffective or harmful policies. These are the people who keep putting one foot in front of the other as they progress towards a world with increasing respect for all and decreasing incidence of HD and its adverse consequences.
Successful projects have shown us how to reduce the incidence rate of MB HD by 16 to 20% per year even without mass multi-drug admin in hot spots, and by up to 40%/year with periodic mass multi-drug admin in hot spots. All that was achieved at a time of low incomes, which continue in some of the successful places. The real tragedy is that exclusion of anergic LL patients from anti-microbial protection, after 12 doses of rifampicin, is considered tolerable. Of all the people in the world, LL patients are the ones who most need to be included in anti-microbial protection yet they are in effect banished to the pre-antimicrobial era. This is unnecessary.
Are we against learning from dramatically successful projects, or furnishing the grassroots with the freedom to succeed? That is where impact continues to be available.
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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