I got my first Drug Sensitivity Test (DST) result in Nov 11, 2004, that was 3 years after I started receiving TB treatment under the management of different private physicians. Sputum tests were overdue not because they were not available but because I was not referred by my first doctor to undergo such tests right after I finished one cycle of TB treatment wherein I did not respond to the medication. She only used x-rays as a diagnostic tool in deciding whether I was already cured or not. I changed doctors 3 times.
My first DST result showed that I was resistant to INH (only). With the DST test, I got more confident that I would be given effective treatment regimen and that anytime soon, I would be declared as CURED from TB but getting freed from TB did not come sooner than I expected. I received continuous treatment under different private physicians. Ten months after my first DST result, I gained resistance to 2 more first line anti-TB drugs, Rifampicin and Ethambutol.
By May 2006, DST showed resistance to all first line anti-TB drugs (Rifampicin, INH, Ethambutol, PZA, Streptomycin). In May 2006, after my doctor exposed me to all the possible drugs available, she referred me to the Tropical Disease Foundation for further management. My baseline DST prior to start of treatment showed that I already had XDR-TB.
Access to diagnostics that can detect resistant TB and access to quality DR-TB treatment once diagnosed are equally important in combating this deadly yet curable disease. As drug-resistance evolves, a series of missteps could lead a patient to deal with XDR-TB disease and its associated repercussions or worst to her deathbed.
MDR-TB and XDR-TB are man-made tragedy to which private physicians are contributors. I guess, right now, no one from the government can compel these private physicians to pay their contributions in reversing this co-created tragedy but I trust that they have morals and ethics to guide them and that eventually they will support the government in its effort to eliminate TB. I wish that one day treatment of TB patients by the private sector could be regulated and mandated by the government.
I was cured on May 2011 yet I am still suffering from constant tinnitus and now wearing hearing aids. The ENT specialist that I visited once told me, “Let’s face it, TB could have cost your life unlike tinnitus. You get my point?”
Was I fortunate that I am now alive and disabled?
Indeed, I felt blessed and fortunate to have survived XDR-TB considering its low survival rate of 23%. But I have to be honest that at times when I am challenged by my deafness, wishful thinking calls on me… what if I had sputum tests earlier?.. What if my resistance to INH was properly managed? .. perhaps there would be no need to explain to employers why I was jobless for 5 years after finishing college… perhaps I had established my career earlier as a Certified Public Accountant... perhaps I could had finished my MBA already… perhaps I would not be deaf just like now… perhaps there would be no need to explain to others why I have impaired hearing and I won’t have to deal with disgusted faces and reactions when I do not hear or understand them… perhaps I won’t have this limiting belief on my capacity due to my disability… perhaps, perhaps, perhaps…
I recognized that nothing about these TB repercussions that I gained will ever change. I will carry throughout my lifetime this tinnitus and my disability which can even get worse with the passing of time. I am dreaming now much less for myself but more for those who are currently challenged by TB… those poor families who could not even complete 3 decent meals a day… those sick mothers who have to take care of their families, those sick fathers who have to provide for their families, those sick children who have dreams to fulfil …
Most of the vulnerable population affected by TB are from poor communities. Perhaps they think that a free TB treatment, taking aside the quality of TB service, is more than enough of what they deserved and for that they should be grateful for. They may not even be aware of their rights to proper and quality TB diagnostics and care that’s why they are embracing whatever it is that healthcare providers give to them as long as it is free. While these affected populations may not be fully aware of what is due to them, it is the government’s responsibility to ensure that they provide the services that should be given without the need for a demand.
Access to diagnostics that can detect resistant TB and access to quality DR-TB treatment are not luxuries that TB patients should be deprived of or to be provided with sparingly. These are their rights. Health is a human right.
I hope that one day would come that whether a TB patient chose to receive treatment from a health center or a private physician both will result into a quality and correct TB management.