Can our tuberculosis patients get their drugs back, please?

23 billion dollars. Or 1469470000000.00 rupees as per today's rate, according to Google.
Keep that number in mind. We will get back to it.

Do you remember the atmosphere that greets our cricket opponents when they walk into Eden Gardens in Kolkata? The greatest cricketers of our generation all talk of how intimidating it is to be there on the field, the gladiatorial cry of 1 lakh spectators making their allegiance felt? Can you picture it from your TV viewing memories - Eden Gardens packed to the rafters, screaming for Sourav to step down the track and deposit the insipid spinner's cricket ball into the stands?

Image courtesy: Wkitravel

Now imagine that you have 22 such stadiums side by side? Is your mind able to draw that image of Kolkata - can you comprehend the unbelievable sound of 22 lakh spectators, screaming simultaneously "Sachiiiiin Sachin!"? You can see them all? Good.

That's how many people get tuberculosis in India in JUST ONE YEAR. 

ALL the people in the first three stadiums will be dead before the end of the year.

You and I are no strangers to the word 'tuberculosis'. We have all heard about it. Caused by a particularly hard-to-beat bacteria and spread easily by cough droplets from an infected patient, it thrives in countries like India where the population density numbers, socio-economic status and hygiene are all in its favour. For centuries, it was considered incurable and fatal. The disease affected and entered via the lungs, but could also find its way to other corners of the body, be in the brain, the spine, the joints or even skin. Owing to its particularly resistant nature, a regular antibiotic course of 7 days did nothing to it. When drugs were first available to treat it, the course of medication ranged from 18 to 24 months. 

Image source: Nature

As you can imagine, very few were willing to take the course completely and it forced researchers to go back to the drawing board and keep looking for a miracle to beat the menace. That miracle would appear in the form of 4 drugs - Ethambutol, Isoniazid, Rifampicin and Pyrazinamide. The above combination helped cut down the duration by half, though that was of course, still quite a long period and one which found variable success often because patients found it difficult to take the medicines daily.

When the World Health Organization recommended DOTS (Directly Observed Therapy, Short Course), we gladly took it up under the title of RNTCP and in fact found it quite successful in the late '90s. To quote from TBC India, the 5 goals back then were:

1. Political commitment to control TB.

2. Case detection by sputum examination.

3. Patients take the pills under the direct vision of the health care provider.

4. Regular uninterrupted supply of the drug.

5. Systematic recording and reporting.

The reasons DOTS was a breakthrough was because it took into account patient compliance, or rather the lack of it. Raise your hand if you think you can take a bunch of yucky large tablets every morning for 24 months non stop, some of which will definitely affect your liver and other organs too.

You didn't raise your hand? Ya, neither did I.

DOTS and later RNTCP worked because it aimed at ensuring that the affected people had every opportunity not to give up on the process - the drugs were free and you had to swallow the pills in front of the health care worker. If you did not show up for your daily pills, they would come to your house and follow up. The priority was clear - they wanted you better. You mattered.

It was a tedious process and infact cost close to a crore of rupees even back in the 50s but it worked and it set the bench mark for what was to come. We were on the road to beating it.

And then suddenly, one fine day, we decided it was not worth treating people with tuberculosis.

At a time when WHO revised its DOTS into the new Stop TB strategy focusing on drug resistant TB, engaging health care workers and empowering TB patients, India decided that spending money on TB was not worth its while. Downsizing the budget for the present 5 year RNTCP plan by a whopping 31% in a single shot, the powers-that-be left the health care officers, workers and patients all in shock. Suddenly, there was a shortage of drugs and cold storage facilities, no money to get new drugs and no money to pay the health workers to do their job. In fact officers from all states and union territories signed a warning letter, terming the present scenario as "alarming" and begged the Center to reconsider their stand before things got out of hand. 

Out of hand? What actually happens if there is no money? 

'People die' would be the easy short answer. Except this isn't a quick death. Tuberculosis is a debilitating disease, destroying you bit by bit, unless you follow the treatment to a 't'. You are a carrier too, spreading it to those around you via your cough droplets, be it family members at home or people at your work place and even on the streets and buses.

Cutting the funds to management of this disease basically cuts access to the drugs and also the salaries of the health care workers. I know we all hate our evil doctors but what harm has this primary health care worker done? 

Image source: GlobalGiving

He goes from house to house, seeking you out to find out if you have symptoms. He helps you get tested if you are symptomatic. Unlike us busy white coats sitting on our thrones, he patiently sits there in your district and village and organises lectures to educate you all about why this disease is so tough to beat. If you are a patient, he waits for you every day to come to the TB centre and collect your medicine, ensuring you eat it in front of him so that YOU GET BETTER. If you don't come one day, he has to get on the scooter and head on over to your house to see how you are and why you did not make it. He does this every day for hundreds of people till they all test negative for TB and finish the whole 6 month treatment.
And you tell him his service is no longer necessary. That we don't have money to pay you so kindly leave. These men and women are physically saving the lives of people but apparently, that is not a priority anymore.

No money? Why are we writing off and pardoning 1000s of crores of losses in companies owned by politicians and their Facebook buddies if we have no money?  Get the money they owe you and give it to the people who truly are toiling for India.
You can't tell me you care for India and then allow literally lakhs of Indians to die when they can be saved just by maintaining a status quo.

Must be pretty expensive drugs then, right?

Image source: here

The course of AKT-4 (the combination pack) comes up to around Rs 400 - 600 a month if bought outside. DOTS used to give it for free to the patients. You can basically cure a human being of the primary infection with a grand total of Rs 3,600 in medicines overall.  

Of course, if you want to forego it, then the second line of drugs which comes once the bacteria is resistant is a whole different story. From what I understand, that costs 50 times as much. 

If tuberculosis hasn't been beaten for so long, then maybe it's not worth fighting it?

During the last twenty years, China halved the prevalence and mortality of the disease. They did it 5 years in advance of the target date of 2015. They earned the respect of WHO for their commitment and also serve as the perfect example for India to follow. Perhaps for once, "Made in China" isn't a derogatory term after all. 

In India itself, the statistics for 2009 show that we have an 87% cure rate for new smear positive cases. There is no rationale in giving up the fight, except for saving money.

Coming back to the topic, polio was considered unbeatable. Smallpox killed millions. And we still beat it. Today, you can say with pride that India is free from polio. A generation ago, noone would have thought it was possible. The credit there is purely due to the combined efforts, by the governments, media and most importantly the primary health care workers and NGOs who toiled in the hot sun and impoverished corners of the country, explaining to you why your child needed those two drops of OPV. That is the sad part: we could beat viruses but are coming unstuck against a bacteria, albeit the big boss of bacteria. 

But giving up on a system that is working well by saying that we don't have money to treat you all is not the answer. Other countries too suffered from TB, including the super powers, and like us they too followed DOTS. Look at their declining rates over decades... It should motivate you more. Our own success with Polio should motivate you.. We did not stop funds when we got rid of 75% of the virus. We chased every single case down year after year till it had nowhere to hide.

*shrugs* Maybe we just let people suffering from tuberculosis die?

Somebody actually asked me this incredulous question and it got me thinking of the mindset of people! Do you think that Tuberculosis affects only the extremely poor? The unskilled and poverty stricken labourers who you secretly write off as 'expendable Indians'? 

Scanning electron micrograph of mycobacterium tuberculosis
Image source: Here.
FYI, the odds are one in three that this is in your lungs right now.

NEWS FLASH: 33% of the world's population is infected with mycobacterium tuberculosis. Look around you. Can you see at least three people? Good. One of you has the bacteria right now in your lungs. The only difference between you and the patient on medication is that you are asymptomatic PRESENTLY because your immunity is better than the big T. That scenario can change at any point of time so let's no go around praying for deaths lest we find ourselves one day pushed into the same boat.

Ask any doctor around. The patients who come to us with tuberculosis extend across all socioeconomic strata. Yes, they are unskilled labourers and their small children but they are also engineers and architects, businessmen and doctors. They are also politicians and doctors, celebrities and star makers. They are old and young, virile and infirm. No group is exempt.

What is troubling is the implication of the question. Those who have the money to buy the drugs for the minimum duration of six months can save themselves. For others? Well, perhaps you were never worthy in the first place.

But why should I care? It doesn't directly affect me.

Again, there is a sense of segregation that I do not really understand here. You are picturing it as a "healthy us" vs "sick them" scenario. Tuberculosis is air-borne and the last time I checked, we were all breathing the same air. Curing those who are suffering is a major priority not just for them but also for your own sake. You cannot just wish away 22 lakh Indians every year. 

Imagine a pond of water from which we all drink. We notice that some suspicious green material is present on one side of the water. When asked to clean it, we shrug saying it is okay, it affects only the people drinking from that side. 

The problem is that the logic above is flawed, isn't it? The material does not stay still but continues to move unhindered across the water, slowly affecting the rest of the pond until finally the whole pond gets affected. And suddenly before you know it, you are partaking of the same green material. 

The solution to this is to help fix the problem - the stitch in time. 

The central government cutting funds to TB and HIV management is a horrible and utterly regressive decision, in my opinion. But I read in one article (I would gladly accept any links... I can't seem to find it) that it was more a shifting of responsibility from the central coffers to the state coffers. If true, that is fine by me but then what happened after that? Why have the states been dilly-dallying ever since? If you have funds or even a plan to get the funds, you don't need a six month waiting period to sign and initiate it. What are you waiting for: An auspicious day to get the new set of drugs?

Of course, if you don't have the funds, then (as my examiner used to say to me frequently during my fumbling viva voces) OPEN YOUR MOUTH AND SAY SOMETHING! Unless you tell it, we cannot start finding a solution. 

Your egos at accepting that you don't have answers can wait - Before this day is over, another 800 Indians would have died because of tuberculosis.

The 5th Tuberculosis Joint Monitoring Mission paints a worrying picture of an impending disaster. If patients do not get their pills, there is the risk of them relapsing. This number of  22 lakh was what we 'achieved' with health officers working at full swing to combat this tiny killer.  The 3 lakh who die every year is when we were doing our best... now we have decided that it is not worth it. 22 lakh affected a year will easily expand to 44 and 66 (This is an airborne disease, remember. If a carrier with a persistent productive cough walks down a busy street filled with hundreds of people, odds are he is likely to transmit it to at least a bare minimum of 2-3 people with compromised immunity.) 

The death toll too would be far greater than 3 lakh a year. Again, doubling or tripling would mean nine fully packed stadiums of Eden Gardens... Every seat filled with a dead Indian we turned our back on. 

Image source: TBepidemic

I want to leave you with a small news item from July that you may have missed. It only appeared in a few papers and was barely deemed news worthy, I guess. It is of the late Dr Suresh Tulshiram , who died in the very same TB clinic he had been working in for over two decades. Constantly being around TB patients took its toll on his health, making him a patient to the very demon he was fighting. In fact, he would get XXDR TB (extremely drug resistant TB) after all those years around patients, a disease which does not respond to either the regular medicines or the backup drugs. The battle would eventually break him down and lead him to depression and drink, literally making him a shell of the man he was in the days before he passed away as he refused food and just waited for death to end his pain. This was a man who knew the in and out of TB. And Tuberculosis did not just beat him, it ravaged him. 

But one point the journalist talks about haunts me even more than that - "in all the years he worked there, the doctor had watched 190 of his colleagues get infected and 82 die." That is how persistent and evil this invisible stick shaped being is... 

I know I speak for every doctor here in India when I say this: to the powers that be at any/every level - let's fight to beat this tiny bugger. Let us not give up on 22 lakh Indians every year. Nobody can do it alone: 

The government needs to revisit what made our initial efforts a success and work to get this derailed train back on track. While others have moved on to WHO's Stop TB strategy, we have now abandoned the 5 key goals of DOTS itself and for no good reason other than to save money. 

You need to realize that no matter what, you are going to end up spending in this matter, whether you do it now or later. Remember that 146,000 crore rupees I mentioned at the start of this article? That is how much money we lose every year because of the loss of man power and hours. All because we felt it was not worth spending 600 rupees a month on an affected person.   

Reminds you of the "for want of a nail, the kingdom was lost" saying, doesn't it?

The medical bodies of the districts, cities and states need to showcase their urgency more vociferously so that it reaches the right ears and action is initiated. You know this is a time bomb that has already started ticking. 

The media needs to do what it does best: enlighten and educate. I know it isn't as interesting as God women in miniskirts and celebrities on Twitter, but I assure you it is more life saving. This is not something that will disappear if you ignore it. On the contrary, it will just keep getting worse and worse.    

We all talk about the threat of a terrorist attack and how hundreds die. And yet, here is a terrorist we know how to stop and with our best efforts, we still cannot prevent the death of 3 lakh Indians a year. And rather than doubling down and working harder, we have decided to just send away the guards, open the gates and let him walk in and kill as many as he pleases.  
Tuberculosis just needs half a chance to become an epidemic again. And I fear we may have given it to the bacterium on a platter.

Author's note:
(15 August 2015) I would like to thank India Medical Times for sharing this post at their site too to help spread awareness.