As the World Tuberculosis Day is on March 24 2016, the focus is on curbing this epidemic by improving diagnosis and treatment facilities. The increasing cases of multidrug resistant tuberculosis has emerged as a greater burden for eradicating tuberculosis.
I met Lucy in Khayelishta (near Cape Town) on the bright sunny morning of 4th December 2015 - just two days after she had celebrated the 10th birthday of her lovely daughter. A cured multidrug-resistant (MDR) TB survivor, her face glowed with the happiness and pride of
winning her battle against two dreadful diseases.
‘Emerging from the nightmare of HIV-positive muti-drug resistant tuberculosis, through effective treatments, Lucy spreads hope for all TB survivors in the world.’
It all began in 2005, when Lucy went to a clinic to confirm her 2nd
pregnancy (she already had a 7 years old son).
There she also took the HIV testing offered to her. She tested positive
for both. The joy of being pregnant was completely overshadowed by her
HIV positive status. She could also not be put on antiretroviral
treatment (ART), as her CD4 cell count was more than 200—the eligibility
criterion for receiving ART as per the then guidelines. "As the
distressing news of being HIV positive sank into me I was completely
devastated. Moreover, with every passing day I was feeling sicker and
losing weight rapidly. By the time I went back to the clinic again, I
was already 5 months pregnant. The doctor wanted to screen me for TB.
But no matter how hard I tried, I could not produce any sputum. My mouth
was completely dry. I was given some antibiotics for 7 days. But they
did not help at all. An X-Ray was not advisable as I was pregnant."
Lucy was sent back home and after several failed attempts did manage to
produce sputum one evening. The test results confirmed TB. It was her
first brush with TB and she was put on treatment for drug sensitive TB,
without any further sensitivity tests being done. By now she was also
eligible to be put on ART. She delivered an HIV negative baby girl on
December 2, 2005. Meanwhile, even after completing her 6 months anti TB
treatment course she was not feeling any better—rather she was getting
worse. This time the drug sensitivity test confirmed MDR-TB. "But the
diagnosis did not shock me at all, as I had no knowledge about the
complexity of MDR-TB and hence no idea about the gravity of my
situation. I was neither counseled nor told anything about side effects
of medication or even the infection control methods I needed to follow.
I was just asked to go to the hospital and begin treatment. Little did I
realize that the treatment would be painstakingly long—it lasted for 3
years in my case—and would be fraught with severe side effects. My baby
girl was also diagnosed with MDR-TB in May 2006, and her treatment
started when she was 5 months old. Both of us are since thankfully cured
completely of TB."
Lucy recalls those testing times with horror and shares with CNS
(Citizen News Service): "At that time there was no integration of
services—I would take my antiretrovirals (ARVs) from one clinic, my anti
TB treatment from another, and my daughter had to be shown in a third
clinic. It was like running from one place to another all the time. Also
I had a tough time giving medicines to the child. With ARVs we have
syrups for children, but there was no such facility for pediatric fixed
dose combination (FDC) MDR-TB drugs. I would crush the tablets and
estimate the dosage to be given. (She screamed with joy when I told her
that FDCs in palatable form would now be available for kids with drug
sensitive TB). Based on her experiential knowledge, Lucy feels that the
overwhelming pill burden, the interminably long duration of treatment,
and the debilitating side effects, coupled with lack of proper
counseling, often make the patients to not comply with treatment. The
stigma attached to the two diseases—TB and HIV—simply adds fuel to fire.
But she is happy that things are improving now on several fronts—
"Earlier it took 2 months to get test results for 1st line TB and 3-4
months for 2nd line treatment for MDR-TB. The advent of Gene Xpert has
changed that. Also the two new drugs Bedaquline and Delamanid are very
promising. And with proper counseling more patients are being helped to
complete their MDR-TB treatment". "Earlier there was stigma even from
healthcare workers, perhaps due to lack of training and correct
information. But now it has reduced. Also decentralization of MDR-TB
treatment and bringing it to the clinic level has helped restore
confidence of healthcare workers and patients alike. It has made them
feel important and equal partners in the fight against MDR-TB".
Lucy has since erased all traces of her sorrowful and turbulent past
with her 'never say die' attitude. Merely talking to her fills anyone
with confidence. She has now been working as a counselor with Médecins
Sans Frontières (MSF) for over 8 years since 2007. She runs a support
group to help MDR-TB patients complete their treatment, and to provide
palliative care to those in whom treatment has failed. She also runs a
radio show. She firmly believes that, "We have to take a holistic view
of treatment and treat patients as human beings. Understanding the
patient is very important. We must assess their behavior and culture
and then offer them solutions for their unique problems. For example, in
my culture if one is vomiting or coughing blood, it is associated with
spirits. So we have to deal with this problem in a special way. We hold
workshops for patients and provide them correct information in a
friendly manner to make them understand the importance of proper
treatment and wean them away from faith based healing."
"Treatment literacy too is very important for patients, but is still
somewhat lacking in the field of TB. I can say from personal experience
that encouraging patients to complete treatment—like celebrating
completion of the injectable phase; engaging patients in chalking out
personalized plans to ensure treatment completion; and charting out
achievable goals (like staying on treatment for next 2 weeks and then so
and on)—does help a lot." With decentralization of MDR-TB care and
treatment services, availability of modern drugs for those in need of
them, and a holistic patients' support, we can beat the monster of
MDR-TB and TB.
Source: Citizen News Service(CNS)-Shobha Shukla