Leprosy Mailing List – May 19, 2019
Ref.: (LML) InfoNTD monthly e-newsletter on NTDs and cross-cutting issues - May 2019
From: Roos Geutjes, Amsterdam, the Netherlands
Dear colleagues,
|
| |
| |
| |
| |
| |
|
| |
|
| |
|
LML - S Deepak, B Naafs, S Noto and P Schreuder
LML blog link: http://leprosymailinglist.blogspot.it/
Contact: Dr Pieter Schreuder << editorlml@gmail.com
|
Leprosy Mailing List – May 19, 2019 Ref.: (LML) Brazil: UN expert on leprosy From: Alice Cruz, Quito, Equador Dear colleagues,
Leprosy: Expert calls on Brazil to redouble efforts to end discrimination · First official visit by UN leprosy expert since creation of mandate · Nearly 27,000 new cases reported in Brazil in 2017, up from previous year · Health care, employment and education concerns for those affected BRASILIA (14 May 2019) – A UN human rights expert expressed serious concerns about the number of children affected by leprosy in Brazil, many of whom are denied access to schooling, and urged the Government to take urgent steps to ensure the rights of those affected with the disease are protected. In the first official country visit since the creation of the mandate, Special Rapporteur Alice Cruz assessed the situation in Brazil, which has the second highest rate of new cases worldwide. Latest data from the World Health Organization shows there were 26,875 leprosy cases in 2017. "I welcome the commitment of the Brazilian Government to become a global leader on the elimination of discrimination against persons affected by leprosy (Hansen's disease) and their family members and on the full protection of their rights, but the Government should take vigorous steps towards this objective," Cruz said in a statement at the end of her eight-day visit. The UN expert expressed serious concerns about the prevailing stigma associated with the disease, and the lack of understanding about transmission and treatment. "Contrary to popular conception, leprosy is a curable disease, it is difficult to transmit and after the first doses of treatment there is no risk of transmission," Cruz said. "I acknowledge the efforts of the Brazilian Government to fight discrimination against this vulnerable group, but I still find significant gaps that need to be addressed. Persons affected by leprosy continue to experience prejudice, structural and interpersonal discrimination and have limited access to fundamental rights and substantive equality. "They still struggle to receive appropriate and comprehensive health care, obtain education and employment, and some are still searching for their children who were forcibly taken in the past," said Cruz. She expressed her serious concern that the rate of children diagnosed with physical impairments was still very high and that many were denied access to schooling on the grounds of leprosy. "More must be done to ensure early detection, prompt treatment, rehabilitation and reconstructive surgery," the UN expert said. "An adequate standard of living must be ensured by poverty reduction policies, as well as accessibility and reasonable accommodation at schools and work settings. Many people who are affected have asked the authorities to take decisive steps to protect their rights, including affirmative policies to tackle inequality and reparation measures for physical and psychosocial impairments and disabilities caused as a result of past policies," she added. During her visit, the expert met federal and local government representatives in Brasilia, Rio de Janeiro and Belem, as well as representatives of civil society organizations, academics and health professionals. She also met people affected by leprosy and their family members in Curupaiti, Rocinha, Marituba and Combu island. Her final report, including findings and key recommendations, will be presented to the UN Human Rights Council in June 2020. ENDS ______________________ Hanseníase: Relatora apela ao Brasil para redobrar esforços no combate à discriminação · Primeira visita oficial da Relatora em hanseníase da ONU desde a criação do mandato · Aproximadamente 27.000 casos novos foram registrados no Brasil em 2017, número acima do ano anterior · Cuidados de saúde, emprego e educação para as pessoas afetadas BRASÍLIA (14 de maio de 2019) - Especialista em direitos humanos da ONU expressou sérias preocupações com o número de crianças afetadas pela Hanseníase no Brasil, muitas das quais tem o acesso à escola denegado, e instou o governo a tomar medidas urgentes para garantir que os direitos das pessoas afetadas com a doença estejam protegidos. Em sua primeira visita oficial desde a criação do mandato, a Relatora Especial Alice Cruz avaliou a situação no Brasil, que tem a segunda maior taxa de casos novos em Hanseníase no mundo. Os dados mais recentes da Organização Mundial da Saúde apontam para 26.875 novos casos de Hanseníase em 2017. "Congratulo o compromisso do governo brasileiro de se tornar um líder global na eliminação da discriminação contra pessoas afetadas pela Hanseníase e seus familiares, bem como na proteção total de seus direitos, mas o Governo deve tomar medidas vigorosas para alcançar esse objetivo", afirmou Alice Cruz em comunicado no final de sua visita de oito dias. A especialista da ONU expressou sérias preocupações com a questão do estigma predominantemente associado à doença e a falta de conhecimento sobre transmissão e tratamento. "Ao contrário da concepção popular, a Hanseníase é uma doença curável e de difícil transmissão, após as primeiras doses de tratamento, não há risco de transmissão", disse Alice Cruz. "Reconheço os esforços do governo brasileiro para combater a discriminação contra esse grupo vulnerável, mas ainda encontro lacunas significativas que precisam ser resolvidas. As pessoas afetadas pela Hanseníase continuam sofrendo preconceito, discriminação estrutural e interpessoal e têm acesso limitado a direitos fundamentais e igualdade substantiva. "Elas e eles ainda lutam, tanto para receber cuidados de saúde adequados e abrangentes, quanto para obter educação e emprego; alguns ainda procuram por seus filhos dos quais foram separados de maneira forçada no passado", disse Alice Cruz. A Relatora expressou séria preocupação com o fato de a taxa de crianças diagnosticadas com deficiências físicas ser ainda muito alta e muitas dessas crianças terem o acesso à escola denegado em razão da Hanseníase. "Mais deve ser feito para garantir a detecção precoce, o tratamento imediato, a reabilitação e a cirurgia reconstrutiva", disse a especialista da ONU. "Um padrão de vida adequado deve ser assegurado por políticas de redução da pobreza, bem como através da garantia da acessibilidade e da acomodação razoável nas escolas e nos ambientes de trabalho. Muitas das pessoas afetadas pediram às autoridades que tomassem medidas decisivas para proteger seus direitos, incluindo políticas afirmativas para combater desigualdades e medidas de reparação tendo em vista deficiências físicas, psicossociais e situações de violação de direitos resultante de políticas passadas", acrescentou. Durante sua visita ao Brasil, além de representantes de organizações da sociedade civil, da academia e dos serviços de saúde, a Relatora encontrou com autoridades do governo federal, estadual e municipal em Brasília, Rio de Janeiro e Belém. A visita também permitiu encontrar com pessoas afetadas pela Hanseníase e seus familiares em Curupaiti, na Rocinha, em Marituba e na ilha do Combu. O relatório final da visita, incluindo as informações levantadas e as principais recomendações, será apresentado ao Conselho de Direitos Humanos da ONU em junho de 2020. FIM Ms Alice Cruz is the first UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, appointed in November 2017 by the Human Rights Council. Ms. Cruz worked as External Professor at the Law School of University Andina Simón Bolívar – Ecuador and in several Portuguese universities as researcher on health and human rights, in particular leprosy. She participated in the elaboration of WHO Guidelines for Strengthening Participation of Persons Affected by Leprosy in Leprosy Services. She has researched and written on the subject of eliminating leprosy and the stigma attached to it and has interacted with various stakeholders, including persons affected by leprosy. The Special Rapporteurs are part of what is known as the Special Procedures of the Human Rights Council. Special Procedures, the largest body of independent experts in the UN Human Rights system, is the general name of the Council's independent fact-finding and monitoring mechanisms that address either specific country situations or thematic issues in all parts of the world. Special Procedures experts work on a voluntary basis; they are not UN staff and do not receive a salary for their work. They are independent from any government or organization and serve in their individual capacity. |
To subscribe/unsubscribe to these emails, please contact media@ohchr.org
Follow the Special Rapporteur on leprosy (personal pages) on Facebook https://www.facebook.com/srleprosy and Twitter @srleprosy
LML - S Deepak, B Naafs, S Noto and P Schreuder
LML blog link: http://leprosymailinglist.blogspot.it/
Contact: Dr Pieter Schreuder << editorlml@gmail.com
Leprosy Mailing List – May 17, 2019
Ref.: (LML) Protection of cured LLp patients
Dear Pieter,
This is a response to the recent post of Dr. Joel Ameida (May 12th) and to Dr. Paul Saunderson (May16th).
I have attended leprosy patients and their families for 35 years. In our National Leprosy Reference Center in Brazil, we report 230 cases/year: 56% of new cases, 15% of relapses and 24% of "therapeutic insufficiencies and failures" of MDT (1), the remaining cases being transferred from other municipalities or states.
During this period, we never stopped performing skin smear examinations (modified Ziehl-Neelsen) and lesion or nerve biopsy (Fite Faraco), even when WHO stopped recommending these tests.
From 2002, we added the anti-PGL-I IgM ELISA serology, qPCR DNA M. leprae and electroneuromyography, not only to aid in diagnosis but also the treatment monitoring. We have observed that 100% of LL patients have viable bacilli in skin biopsy in the 12th dose of MDT/MB and little more than 30% have viable bacilli in the 24th dose of MDT/MB. This percentage has risen silently.
In addition, several LL and BL patients who presented only fragmented or granular bacilli at discharge of 24th dose of MDT/MB, one year or more in post-discharge monitoring, presented viable bacilli in the biopsy and/or a considerable increase in ELISA index (IE) and/or increased DNA loading in qPCR, with decrease of Ct (Cycle threshold: detection threshold - minimum number of cycles for amplification).
Thus, it is not difficult to prove the hypothesis that anergic individuals continue to disseminate bacillus in the post-discharge of scheme MDT / MB 12 doses of fixed duration, and even at high risk of being reinfected with M. leprae, becoming one of the links responsible for the transmission chain and maintenance of the endemic disease.
If bacilloscopy, serology and molecular tests were available in leprosy reference services, as recommended for the control of other infectious diseases that have resources, such as HIV / AIDS, we could easily prove the therapeutic insufficiency of scheme MDT/MB-12 doses and the therapeutic failure of scheme MDT/MB-24 doses, to cure LL and BL patients.
One must be ethical and have intellectual honesty to speak in healing anergic LL patients or those BL with discrete cellular immune response treated with 12 doses MDT/MB scheme. Of course, if we perform routine tests at discharge of 12 doses MDT/MB, we can prove that there are viable bacilli on the skin and intradermal skin smears, and those patients will not be able to clear that bacilli burden and will be abandoned to their own fate.
Mycobacterium leprae is a virulent bacillus because it damages the nerve and this is intolerable! We need to recover the knowledge of the microbiology of the bacillus, the pathophysiology of leprosy and the clinical expertise, so that we can really stand in front of questions of cure, therapeutic insufficiency, therapeutic failure and relapse. Unfortunately, the expertise in leprosy was lost with the simplification of the disease as a dermatological disease and without the necessary exams for diagnostics and to prove the cure. Most of the hegemonic knowledge produced in leprosy comes from researchers who stay at their desks without the slightest notion of what actually happens in the everyday practice, in monitoring patients in the long run.
Considering that leprosy is a bacterial chronic disease, we should evaluate the possibility a proposal to keep LL/BL patients free of bacilli post-discharge, not as it was done in China with daily doses of dapsone or other monotherapy, but including in the post-discharge monitoring, a monthly dose supervised of scheme ROM (Rifampicin+ Ofloxacin+ Minociclin) or scheme MCM (moxifloxacin + clarithromycin + minocycline) or scheme RMC (Rifampicin + moxifloxacin + clarithromycin) for an indeterminate time, as it is done for HIV control, because it is a viral chronic disease.
In 2011, we have discussed about leprosy vaccine at the Federal University of Uberlândia / Minas Gerais, Brazil, with Dr. Steven G. Reed, Dr. Malcolm F. Duthie and Dr. Tom Gillis. Our concern at the time, which still remains today, is how to vaccinate against an intracellular bacillus of Schwann cells, without destroying this neural cells? What about infected contacts with subclinical disease? And the anergic ones?
When monitoring family contacts of leprosy, we found that the vast majority is weakly positive to Mitsuda test (4-7mm) and slightly more than 10% present negative Mitsuda test (0-3mm) (2). Therefore, our vast majority of the population would be genetically "borderline" and several are already infected, developing subclinical neural damage, as has been demonstrated by our research group (3).
It is necessary to face a new history for the leprosy of the XXI century and not to believe in that "historia de la carochinha" (children's fantasy), referring to the nineteenth century, that leprosy will end as a magic pass!
Nowadays, quite the contrary, with 10 million refugees worldwide, where the expertise of diagnosis and monitoring of the disease has been lost, where are we going to stop?
My best wishes for a real world without leprosy.
Isabela Goulart
References:
1- Brasil/ Ministério da Saúde/ Secretaria de Vigilância em Saúde/ Departamento de Vigilância de Doenças Transmissíveis/ Coordenação Geral de Hanseníase e Doenças em Eliminação. NOTA INFORMATIVA Nº 51, 5 de outubro de 2015.
2- Araújo, Sérgio et al. Risk-benefit assessment of Bacillus Calmette-Guérin vaccination, anti-phenolic glycolipid I serology, and Mitsuda test response: 10-year follow-up of household contacts of leprosy patients. Rev. Soc. Bras. Med. Trop. [online]. 2015, vol.48, n.6, pp.739-745. ISSN 0037-8682.
http://dx.doi.org/10.1590/0037-8682-0245-2015
3- Santos DFd, Mendonça MR, Antunes DE, Sabino EFP, Pereira RC, et al. (2018) Molecular, immunological and neurophysiological evaluations for early diagnosis of neural impairment in seropositive leprosy household contacts. PLOS Neglected Tropical Diseases 12(5): 0006494.
https://doi.org/10.1371/journal.pntd.0006494
Dr. Isabela Maria Bernardes Goulart, MD, PhD
Associate Professor – School of Medicine
Universidade Federal de Uberlândia - UFU
Coordinator and Head of the National Reference Center for Sanitary Dermatology and Leprosy - Clinics Hospital – UFU, Uberlândia - MG, Brazil
www.credesh.hc.ufu.br; credsh@hc.ufu.br; imbgoulart@gmail.com
Phone: +55 34 32391312; (34) 32391311
LML - S Deepak, B Naafs, S Noto and P Schreuder
LML blog link: http://leprosymailinglist.blogspot.it/
Contact: Dr Pieter Schreuder << editorlml@gmail.com
Leprosy Mailing List – May 17, 2019
Ref.: (LML) Global Partnership for Zero Leprosy
Dear colleagues,
The Global Partnership for Zero Leprosy is a coalition of groups committed to ending leprosy, also known as Hansen's disease. Together with our partners we are aiming for zero leprosy through a country model, by partnering with national governments to address local priorities and strengthen capacity.
The country model strengthens programmes by:
We are hosting a webinar on our country model to inform others about the approach and share the goals of our work. We invite you to join us for this webinar discussion on the 29th of May.
Webinar: "A Country Model for Zero Leprosy"
Wednesday, 29th of May: 8:00-9:00 a.m. ET (12:00-13:00 GMT, 14:00-15:00 CET)
Registration is required. Please register here:
https://forms.gle/pBf3WQyCj6y6taND8
For more information about the partnership and our recent work, view our May newsletter here: https://mailchi.mp/0af95302625d/62umkk2ihk-137031
Andie Tucker
Task Force for Global Health
LML - S Deepak, B Naafs, S Noto and P Schreuder
LML blog link: http://leprosymailinglist.blogspot.it/
Contact: Dr Pieter Schreuder << editorlml@gmail.com
