Wednesday, February 28, 2018

Rare Disease Day



The last day of February every year is observed as Rare Disease Day. A Rare Disease is defined as one that affects fewer than 1 in 1,500 to 2,000 people. There are estimated to be about 7,000 rare diseases. There are about 300 million people living worldwide that have a rare disease.

The trouble with rare diseases is that often they do not get much attention as the number of people affected by each disease is very small. This means that very few companies would consider developing treatments for a rare disease. When a treatment is discovered or developed, the pricing must be high enough for it to make economic sense for those investing money in it since the number of patients that could potentially be treated is very low.

Many rare diseases are of genetic origin and appear early in life. About 30% of children affected with a rare disease die before they turn five years old.

My primary disease Atypical Hemolytic Uremic Syndrome (aHUS) is classified as an ultra-rare disease. A disease is defined as an ultra-rare disease if it affects fewer than 20 per million population. aHUS is estimated to affect 2-3 people per million population. The problems that exist with rare diseases are often compounded with ultra rare diseases.

Currently, most Indian rare disease and ultra-rare disease patients do not have access to what is considered the standard of care in developed countries as the Indian population cannot afford the extremely expensive treatments that are available elsewhere in the world. What Indian patients hope for this Rare Disease Day is to be given a fair shot at a normal life, to get access to a life-saving treatment that is available elsewhere in the world and we are denied because of two accidents - one of genetics and the other of geography.

Friday, February 16, 2018

Cross infections in dialysis centres - the hows and the whys

Cross infections with the Hepatitis C virus have become a menace in many dialysis centres. Hepatitis B and HIV viral cross infections are also possible though rare. A viral cross infection occurs when a virus is transmitted from a carrier of the virus to someone who did not carry the virus. Viruses multiply rapidly and typically, if the body is unable to fight and kill the virus completely (which happens rarely and that too, before the virus has got a chance to multiply significantly), the new individual becomes a carrier of the virus as well.

The likelihood of transmission of these viruses in hemodialysis centres is greater because blood is coming out of the body and is passed through the dialyser (artifical kidney) and the bloodlines. Reprocessing of dialyzers and bloodlines increases the chances of this transmission because these items are taken to a reprocessing area where they are washed, sterilised and prepared for next use for the same patient in his or her next dialysis session. In this process however there is a chance of some blood from another patient’s dialyzer and bloodlines entering this set. Though this should not ordinarily happen, the chances are not zero.

Most dialysis centres have separate dialysis machines and reprocessing areas for those infected with these viruses. But this does not preclude the transmission of these viruses due to one major problem with the way in which blood samples are tested for the presence of these viruses before deciding whether the patient is a carrier of the viruses or not.

When the virus first enters a person’s body, within a few weeks, the body develops antibodies to the virus which try to fight the virus and kill it. These antibodies are easier and cheaper to test than the virus itself. So, most tests make use of testing whether the blood of the patient contains these antibodies or not. If it does, it is assumed that the virus also must be there. If not, the patient is certified as a non-carrier of the virus.

The trouble with this method is that typically the body takes a few weeks to develop these antibodies. So, if the patient has acquired the virus recently, even if this test is done, he or she could be certified as a non-carrier of the virus. What this means is that even though the patient is a carrier of the virus, he or she is going to be treated like a non-carrier allowing the chance of other true non-carriers to be infected since the carrier is going to be treated on the machines and reprocessing areas meant for non-carriers.

There is another more reliable test which actually directly tests for the virus itself. This test would give a positive result soon after an infection has happened. However, this test is many times more expensive than the antibodies test. Very few people can afford this test. Also it is not enough if only you pay for the test. This works only if every patient starting dialysis in the centre gets tested by the same method because you can get infected by another patient who decides not to do the more accurate test.

This is a major problem in dialysis centres in much of the developing world today. Research needs to be done to figure out ways by which the cost of the more accurate test can be reduced to bring it within the reach of most patients. Otherwise it would be very difficult to contain this problem.

Wednesday, February 14, 2018

Ayushman Bharat: India takes another baby step towards Universal Healthcare

India took another small step towards Universal Healthcare this month. The government announced the Ayushman Bharat scheme. The highlights of this scheme are:
  • Allocation of Rs. 1,200 for converting 1,50,000 health centres to comprehensive Primary Healthcare Centres covering a range of basic services
  • A National Health Protection Scheme (NHPS) where the government would cover 10 crore families for secondary and tertiary healthcare services 
Within a short span of time, several criticisms of the plan were voiced including the low fund allocation for the NHPS, lack of focus on strengthening the Public Healthcare system and the scheme being tailored to benefit private players.

The Niti Aayog held a press conference to clarify many of the misgivings. They stated:

1. There would not be any co-pay to be borne by the beneficiaries
2. There would not be any cap on the number of members of a family
3. The scheme would be funded jointly by the Centre and the states similar to how such schemes are regularly funded

Additionally, several clarifications were issued about the premium amount estimated, the modalities and timelines of roll out etc.

Whichever way you look at it, India has now firmly embarked on its Universal Healthcare journey. We may eventually reach true, genuine, uncapped, equitable and fair healthcare coverage for all citizens in many decades from now. But we have started on the journey. This is an important step in any country’s life.

Granted, there are many things that need to be fixed. There are many lacunae. But then, Rome, they say, wasn’t built in a day. To fix India’s healthcare system is an infinitely more complex task. Such a mammoth task would be impossible to get right in one shot, at one go. This is something that can only be done in an iterative manner. Implement things, figure out the kinks and then fix them in the next iteration. This process has to go on till a smooth system is established.

That is not to say that we must not learn from the mistakes of other countries. Worldwide, it has been proven that public healthcare systems are the ones that work the best in providing Universal Healthcare. India must strive to bolster its public healthcare system. The current, highly inadequate 1% of GDP that is spent on public healthcare needs to be tripled to reach somewhere close to global averages. We all know however that for our public healthcare infrastructure to reach optimum or even adequate levels of quality and access will take some time. In the meantime, we must continue to find other means to achieve partial success in some areas of healthcare.

Prof. Vivekanand Jha, Chief Medical Officer of NephroPlus and Executive Director of The George Institute for Public Health, India, summarises this best in an article in The Wire:

“Irrespective of the pros and cons, the most important contribution of the finance minister’s Union Budget speech is that for the first time, healthcare seems to have come to the forefront of public debate arena in India. It is important for all the stakeholders to ensure that this conversation stays alive. It is impossible to say how long it might take to reach a stage where access to essential equitable healthcare becomes a reality for a majority of the population, but we seem to have made a start.”

Sunday, February 11, 2018

Make the Karni Sena pay for the damage

I saw Padmaavat yesterday. Nothing in the film depicts the Rajputs in a negative light. What was all the fuss about? What exactly was the Karni Sena protesting? Why did the four states that banned the film do this? What kind of mockery have we turned ourselves into?

Everyone seems to have forgotten the way the Karni goons announced rewards for Deepika Padukone’s nose. We have also forgotten the damage done by them to public property and the way they held the film makers to ransom. They have apparently taken back their protest after watching the film and have announced their support to the film offering to help to release the film.

This would have been funny had it not been so completely ridiculous.

I can guarantee that no government is going to take any action on the Karni Sena. They will be allowed to get away scot-free. This is not the denouement that we should allow. Stringent action must be taken against the thugs of the Sena that unleashed their mindless and unjustified fury against the film makers. They should be made to pay for the damage caused. They must be made to compensate the producer of the film with the revenue that the film has lost. Take the revenue of states with a similar population and make the goons pay this to the producer. If this is not paid within thirty days, arrest the office bearers of the Karni Sena under sections similar to those when compensation is not paid as ordered by the court. 

The judiciary must make an example out of this incident so that no lunatic fringe group can ever dare to commit such a crime again.

Friday, February 9, 2018

The Lodha spa pool fraud

My parents and I moved a few months back into a flat in an apartment complex called Lodha Bellezza at Kukatpally in Hyderabad. One thing that we were excited about was that every flat in this complex had something they called a ‘spa pool’ in the main balcony next to the living room. In the plan showed in the brochure they cleverly omitted the word ‘spa’ and only had the area shown as ‘pool’. Which leads me to the question, “What exactly the hell is a spa pool?”

A quick search on the internet revealed the following: Typically, spa pools refer to small, heated and jetted pools that are built into the ground.

I pictured myself spending many relaxed evenings in the spa pool. I drew mental images of hot water jets massaging my aching backs after a tiring day at work. Except that the said spa pool was neither heated nor jetted. Ok. Small inconvenience. Who needed hot water in a spa pool in hot Hyderabad, I said to myself. 

When we moved in we learnt that most people in the apartment complex had demolished the spa pool and converted the balcony into a deck. We decided to wait for some time and then decide. It’s been about four months since we moved in. How many times have we filled the spa pool? All of once. Filling it took hours. We couldn’t figure out how to empty it. We were asked not to leave the water in it for more than two days. We called the maintenance guys who never showed up despite repeated reminders which was strange because they were very prompt in attending other complaints. Slowly water began appearing in our bedroom walls. We then called the maintenance guys and shouted at them and ensured they came and emptied it promptly. The seepage stopped.

We are soon going to be demolishing the spa pool. So much for the excitement. To be fair, the apartment complex is a very nice place with very good facilities. The place looks like a resort with all the landscaping. The swimming pool, gymnasium and all other sports facilities are all world-class. It’s only the spa pool I have a problem with.

When I look back, I think this was a brilliant marketing gimmick used by the builder. This is something that would excite everyone and be utilised by no one. What a waste of money first in building it and then in demolishing it.