For instance, a member of BNP+ (name withheld) was diagnosed of TB in 2004, but due to anti-TB drug-stock out for a week at the DOTS centre, he was asked to buy medicines from the pharmacy, which were beyond his economic means. Due to treatment interruptions possibly, only later he found out in a hospital where he was admitted for AIDS-related care, that he is suspected to having developed resistance to anti-TB drugs. The drug susceptibility tests later confirmed that he had multi-drug resistant TB
He could have, possibly, successfully completed the treatment for drug-susceptible TB through DOTS - only if quality counseling and regular supply of drugs among other issues were addressed. He didn't intend to develop drug resistance to anti-TB drugs, then why the blame, which often comes to people with TB, for not 'complying' to DOTS and fueling drug-resistant TB? Let us not forget that the other stakeholders in TB care including the clinicians are equal partners.
He legitimately needed information on TB treatment adherence, related side-effects, drug toxicity and other related issues. Living with HIV, he had relatively much more AIDS-related treatment literacy and awareness about his rights and responsibilities than he had on TB-related care.
He later ended up buying drugs for MDR-TB treatment for 2 years (2005-2007), at a cost of Rs 3,600 (USD 72) per month. Along with his MDR-TB drugs, anti-retroviral treatment (ART) and other drugs for AIDS related opportunistic infections, he was taking 53 drugs daily - for 2 years. The side-effects were too strong and really hard for him to bear--and it was only due to strong determination to complete his treatment that he continued. He felt extremely irritated, reactive, had lower abdominal pain, developed ulcers in oral cavity, and then had eye-sight related problems after 12-14 months of MDR-TB treatment.
It was not the treating physician who provided him much-needed counseling but his private doctor who helped him understand the disease, the treatment and related issues. No one explained to him about infection control measures.
Also the high-levels of HIV-related stigma rampant in TB related care settings, is alarming. Before he got diagnosed for TB, the moment the DOTS staff came to know about his HIV status, he got referred to another hospital. Mostly the reasons given were 'no instruments' to conduct biopsy. Only when he didn't reveal his HIV status, his biopsy could be performed and he tested positive for TB.
The real issues that are threatening to reverse the relative gains India has made on TB control are best-known to the affected communities who had to deal with these issues on daily basis. Time is running out before TB programme managers shift gears from clinical approaches to community-centric approaches to TB care and control.
Unless the healthcare workers and people with TB/ drug-resistant TB or TB-HIV co-infection interact as equal partners of TB care and control, how else are we going to improve the responses to TB and HIV?
The AIDS and TB pandemics have alarmingly joined forces long ago, particularly in high-HIV settings. But those working to address TB and HIV, are yet to work much more closely together on the frontlines than they are doing presently. (MDR-TB) now.
The initial steps have been taken in Delhi for example, where healthcare workers and community representatives are coming together to forge a Community Care Club, so as to strengthen healthcare in general, particularly for people with TB in the region. This initiative is being led by the members of Delhi Mahila Samiti (DMS), a women's forum of Delhi Network of people living with HIV (DNP+) and World Care Council (WCC).
The people from affected communities have a critical role to play as equal partners. The need to raise awareness about the rights and responsibilities of people with TB (or drug resistant TB) or TB-HIV co-infection, and opportunities for them to contribute in strengthening TB and AIDS-related care services is compelling. The members of the affected communities need to be respected with dignity as equal partners in TB care and control. Quality counseling is certainly just one of the many areas where they can potentially play a vital role with dignity. The Patients' Charter for Tuberculosis Care (PCTC, The Charter) has been identified in the global Stop TB Strategy as a tool to achieve the International Standards for Tuberculosis Care (ISTC). Many country programmes also recognize the Charter, including the revised national TB control programme (RNTCP) of India, which enlists the Charter as part of the national TB control strategy.
However, clearly a lot more needs to be done to achieve the goal of people with TB, particularly those who are at a higher risk of contracting active TB or drug-resistant TB, like people living with HIV, to embrace the Charter and advocate for raising standards of TB care in their communities.