To: Mr. Rajesh Bhusan Chairperson, CCM
Room no 156-A, Nirman Bhawan
New Delhi
secyhfw@nic.in
Alok Saxena,
Additional Secretary & Director-General
NACO
js@naco.gov.in; dgoffice@naco.gov.in
Dr. Anoop Kumar Puri Deputy Director-General
NACO
anoopk.puri@nic.in
Dr. Shobini Rajan
Deputy Director-General
NACO
shobini@naco.gov.in
We are writing as people living with HIV (PLHIV) and organisations working on HIV. We appreciate the efforts of the National AIDS Control Organisation to update the guidelines on opportunistic infections to address Advanced HIV Disease Advanced HIV (also known as AIDS) as per World Health Organisation (WHO) recommendations.
Even today, in the era of antiretroviral therapy, we are losing people living with HIV to AIDS-related illnesses (such as TB, pneumocystis pneumonia in the lungs, cryptococcal meningitis, a painful fungal infection of the brain, CMV and toxoplasmosis). One-third of people living with HIV still present in ART with CD4 cell counts of less than 200 cells/mm. We have also seen PLHIVs on ART develop resistance to their regimen and become vulnerable to the above life-threatening bacterial and fungal infections.
We are concerned that PLHIV in India currently do not have access to the complete package of screening tests, prophylaxis and treatments needed to reduce deaths due to Advanced HIV Disease.
We demand that NACO:
1. Focus on vulnerable PLHIVs who have low CD4 and critically unwell AHD patients in the ART programme;
2. Screening for TB and Cryptococcal Meningitis: ART centres do not have the tools to screen for life-threatening bacterial and fungal infections. Ensure that screening with TB-LAM and CrAg Cryptococcal Antigen Lateral Flow Test is carried out systematically at all ART centres in people living with HIV with CD4 below 200;
3. Registration of TB- LAM – NACO should support the registration of TB-LAM test in the country by the CDSCO and request the DCGI to waive local studies and validation requirement as the WHO already recommends use of the first generation TB lipoarabinomannan (TB LAM) test for diagnosing TB in people with HIV; NACO and SACS must ensure referral for Hospital level facilities to provide critical care to PLHIVs with AHD and that they are not turned away due to stigma and discrimination;
4. CD4 testing – Ensure that all PLHIVs on ART can access CD4 testing and not just at the time of ART initiation;
5. Viral Load – Ensure that all PLHIVs on ART are able to access viral load testing as recommended by the WHO. Many states are reporting that viral load monitoring has been disrupted or delayed due to COVID-19 and the end of contract of viral load services with the agency Metropolis;
6. Prevention of AIDS-related illnesses – Prioritise and strengthen preventive therapy for TB (TPT), Fluconazole pre-emptive therapy for cryptococcal meningitis and Co-trimoxazole Preventive Therapy (CPT) as it protects PLHIVs with stage 3 or 4 diseases or CD4 <350 cells/mm from Pneumocystis pneumonia (PCP), toxoplasmosis and other bacterial infections;
7. Access to drugs for AHD – Monitor the availability of essential drugs for AHD (fluconazole, conventional amphotericin B or Liposomal Amphotericin B, flucytosine, valganciclovir and antibiotics) at the state level. Some medicines may need to be centrally procured by NACO and made available for AHD;
8. Ensure pediatric formulations (LPV/r, ABC/3TC, DTG) are not merely exported but available to the ART programme;
9. Ensure NACO’s centres of excellence have clinical expertise and appropriate laboratory capacity in the management of critically unwell AHD patients;
10. Funding – Incorporate AHD into Global Fund requests and U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) Country Operational Plans;
Signatories:
All India Network of Sex Workers
Andhra Pradesh Drug Users Forum
ARK Foundation
Community Network for Empowerment (CoNE)
Council of People Living with HIV/AIDS of Kerala (CPK+)
Delhi Network of Positive People
Ganesh Acharya, TB Survivor & TB Activist
Gujarat State Network of People living with HIV / AIDS (GSNP+)
Meghalaya Users Forum
Meghalaya State Network of Positive People
Northeast Regional Network of People living with HIV
Network of Maharashtra People with HIV (NMP+)
National Coalition of People living with HIV in India (NCPI+)
Parveen Sharma, Fight Aids Coalition
Positive Women Network
Human Touch Foundation
Sankalp Rehabilitation Trust
Sahara Aalhad and Sahara CFRCAR
Sikkim Drug Users’ Forum
South India Drug User’s Forum
The International Treatment Preparedness Coalition (ITPC), South Asia
Uttar Pradesh Welfare for People Living with HIV/AIDS Society (UPNPplus)
Uttarakhand Association for Positive People Living with HIV/AIDS
Cc.
1. Ms. Shyamala Nataraj, Community Representative, CCM
2. Mr. David Bridger, Country Director, UNAIDS, India
3. Dr Rohini Gupta, National Professional Officer- HIV & Hepatitis, WHO India
4. Dr. B.B. Rewari, Scientist HIV/AIDS/STI/Hepatitis, WHO SEARO