Thursday, February 28, 2013

Great news: The aHUS Foundation website now has an adult tab!

Atypical HUS was always thought to be a disease that affected children. However, over the past few years, it has been seen that the disease affects a few adults as well. There is a foundation called the Foundation for Children with Atypical HUS that has served as a support group for families with children that have aHUS. Since there was no separate group for adults, we adults with this disease would also flock to this foundation's website for information and support!

Of course, it worked really well since the information was very similar.

However, there is no denying that the issues an adult with this disease has to face are very different from those that a child has to face. On the occasion of Rare Disease Day this year, the foundation has now added a whole new section for adults with aHUS!

I am happy to add that I have been able to contribute to the section myself. I was asked to present my perspective on having this disease and the issues I face. I was very happy to write a small article that would go into this section. Here's a link to my article.

Many thanks to Linda Burke, a mother of kids with aHUS for being the tireless crusader for all things aHUS for kids and adults for making this adult tab happen!

Wednesday, February 27, 2013

Half knowledge is....

Yesterday I went for three investigations. A 2D Echo cardiogram, an ultrasound of the abdomen and a liver scan. The first two were fairly straightforward. The third was a funny experience.

I walked in to the place they do the scan. There was one guy behind the reception and one bald, obese guy slouching on a couch watching television. The set-up wasn't too promising. After paying the amount for the test, I was ushered into a room where they did the scan and I was asked to wait in the main hall where the fat guy watched TV.

He was on the phone with someone. I overheard him say, "Tell him there is a construction project I can get him worth 10 cr. Quality has to be good. I got other such projects as well but they did not do it well so I am looking for someone else."

"He might have to pay some charges to the person who is helping to get this project. All that we will finalize."

I could say for sure that this guy is the one who is going to take those 'charges'! I was also sure that there was no other project which he has got and given to others. It all seemed like the white lies business people say. Everyone knows they are lying but they will still use them.

Once he got done with his call, he turned his attention to my prescription for the test. He started asking me questions. "Why are you getting this test done? What is the problem?"

He seemed to be a doctor of some kind. He knew the jargon. He asked me why a nephrologist had prescribed the test. I said I am a dialysis patient and have been on dialysis for 16 years."

"Oh!"

And then came the inevitable set of questions.

"How much is your creatinine?"

Never mind that creatinine after 16 years of dialysis HAS NO FUCKING SIGNIFICANCE!

I hadn't even measured it in ages. But I could see that there was no point in explaining this to him. I muttered an arbitrary number.

"How many times do you do dialysis?"

"Six night a week, seven hours each night."

He raised his eyebrows and I could almost hear him think, "Oh! that bad huh!" I am sure he thought that this guy is in such bad shape he needs dialysis daily! I had no patience to start explaining to him the benefits of daily dialysis. He was still slouching on his couch and if he continued that way for ANOTHER DAY, he might need dialysis soon!

When the report came, he was surprised. He upbraided the technician and said we should repeat the test. He made me go back into the room and supervised the tech while he did the test again. The report was the same.

"You have a healthy liver!" he concluded. He said he expected it to be worse but this is like 'totally healthy'. He seemed disappointed!

"Thank you" I exclaimed, took the report and got out of there!

Tuesday, February 26, 2013

Tomorrow is Rare Disease Day

I have a disease called Atypical Hemolytic Uremic Syndrome (aHUS). This disease is classified as an Ultra Rare Disease - less than one in a million adults are estimated to be affected. The problem with having a disease this rare is that not much research happens. Since the estimated number of people who would benefit from the work done by doctors is only a handful, there is less excitement, I presume!

Contrast this with some of the more common causes of kidney failure. You will have many more people who would benefit. Fair enough!

Where does that leave people like me though?

Well, there is some work happening now. There are a few groups of people who have started giving aHUS some love. Prof. Bernard Kaplan of the Children's Hospital of Philadelphia, Dr. Tim Goodship and his team in University of Newcastle upon Tyne, Prof. Giuseppe Remuzzi and his team in Mario Negri institute, Italy, The University of Iowa in the US are all doing some really great work on this disease.

Since the number of people who would benefit from the drugs that could treat such diseases would also be very low, the drugs are also very expensive.

Soliris (the brand name for the drug eculizumab), that is used to treat my disease, aHUS, has been declared by Forbes as the most expensive drug in the world today! Talk about luck!

This takes it completely out of reach for people like me. For the people lucky enough to be in countries  where insurance takes care of even such drugs or countries where the Government covers healthcare, this drug is helping many people get back their lives which had been badly affected by aHUS.

The total number of people affected by a rare disease is huge. Its just that the number of people having each disease is tiny! There is a concerted effort under way in many countries to work together since the issues faced by most of these people are the same.

Thursday, February 21, 2013

Wanted: someone who can take some brave decisions with regard to dialysis costs in India

So, you see, there are solutions to this very serious problem. Apart from what I proposed, there could be many such solutions. There is a lot of Government money beng spent on various non-critical items. As we have seen, even one such item would be sufficient for the entire problem to be resolved.

The Government can announce an initiative that it would fund the dialysis of every citizen of India matching certain financial criteria in phases. To begin with, start with BPL (Below Poverty Line) citizens. Partner with private players to provide this. This would be very similar to the Andhra Pradesh Government's Aarogyasri scheme. Again, do this in a few states and then extend it to all states.

The next step could be to include other sections of the society by introducing some basic payment for those not BPL. This could also be done in a few states to begin with and then slowly cover the entire country. The biggest advantage the government would have is the volume. This humongous volume would help it strike very good deals with all private players involved right from providing the actual service to the space to the consumables. I can  guarantee that any company in the dialysis business would be more than willing to take this project up.

Yes, there will definitely be problems. Any such scheme would involve a lot of work, a lot of planning, a lot of co-ordination between different Government departments. There could potentially be a lot of scope for corruption and malpractice. But because of this, are we going to shy away from the problem? Pretend that it does not exist? Or pretend that there is no solution?

People are dying. They don't need to. That is the bottom line.

What then is needed to make this happen?

Vision. That's it.

All it takes is intent. Someone with a plan. Someone with balls. Someone who genuinely wants to make a difference. Someone who has the courage to think differently.

Unfortunately, the current dispensation at New Delhi can hardly be credited with these!

Wednesday, February 20, 2013

Why should the Government worry about dialysis only?

Yesterday I wrote about how the Government could make sure that not one Indian needed to die due to the lack of financial resources to pay for his or her dialysis. Some people might question the logic of the money saved from abolishing the Haj subsidy being spent entirely on dialysis. Why not look at other diseases?

Which other disease needs such large amounts to be spent on a treatment week after week, often lifelong, with no respite unless a transplant is done, which itself is very rare?

Someone has a heart valve blockage, one major surgery is done and the person is put on medication. That's it. Someone gets cancer, several rounds of chemotherapy and medication mostly does the trick. Almost every other common disease I can think of needs a temporary intervention possibly followed by medication.

Chronic Kidney Disease is probably the only condition that requires continuous, unending spends of large sums of money on a treatment that is needed just to keep one alive. The number of people that are affected is also quite large to ignore.

There is a precedent too. In the US, End Stage Renal Disease is the only medical condition for which Medicare, the US scheme for medical coverage, provides unending coverage.

It is high time the Indian Government woke up to this reality and did something about it. Especially when we realise that there are practical solutions to this gigantic problem. It is sad that when the money is available, the resources are available, the people are available to make this happen, it still does not happen.

Tuesday, February 19, 2013

How the Government can wipe out the financial problems of dialysis patients

The Government spends more than Rs. 1,000 crores on the Hajj subsidy given to Muslim pilgrims every year. According to Wikipedia, Maulana Mahmood A. Madani, a member of the Rajya Sabha and general secretary of the Jamiat-e-Ulema-e-Hind, declared that the Hajj subsidy is a technical violation of Islamic Sharia, since the Koran declares that Hajj should be performed by Muslims using their own resources.

Thankfully, the Supreme Court ordered that the Government end this practice by 2022. Well, in my humble opinion it should be done sooner. Why the delay?

Now, let us examine the statistics on dialysis patients. According to a oft-quoted paper titled "The Economics of Dialysis in India" by reputed nephrologist Dr. Umesh Khanna from Mumbai, there are about 20,000 patients undergoing dialysis in the country today in about 700 dialysis centers which have about 4000 dialysis machines. Let us take just these patients for now. The Government can easily make sure that dialysis is provided at Rs. 800 per session to them. The cost of thrice weekly sessions (many Indian patients don't even undergo thrice weekly sessions but let us give them much better dialysis) comes to just Rs. 230 crores!

It is estimated that only about a fifth of the patients who actually need dialysis get dialysis in India. The rest die due to their inability to afford the expensive treatment.

So, what would it cost to give the same thrice weekly dialysis to ALL the patients who require it? Simply multiply the above figure by 5. What do you get? Rs. 1,150 crores!!!

What does this mean? By diverting the money being spent on the Haj subsidy (which Muslims themselves do not want) to dialysis, you can provide very good dialysis to every Indian that needs it!!!

What could be more shocking than this?

Also, throw in guidelines like only people below a certain annual income can avail free dialysis, the rest have to pay a reasonable amount and you can actually even give them the required dose of Erythropoietin!!!

This is a startling fact! All this while at least I have been thinking that people in India don't get dialysis  because of a financial problem. Nothing could be farther from the truth! The reason people in India don't get dialysis is simply because the Government cannot think out of the box.

What about the cost of setting up the centers? This can easily be figured out and there are many companies in the country today that would be willing to give an arm and a leg to get those kinds of volumes!

Sadly, I know that even though this solution is possible, no one will act on it. Many patients will continue to die. And we will all blame the lack of money for this. Sad, indeed!

Monday, February 18, 2013

Plug the loopholes and legalize selling of silver bangles!

Currently, in most states in India, it is illegal for people to sell their silver bangles. This has got to change. If someone is in desperate need of money and wants to sell something as important as a silver bangle, we must understand that the need must truly be dire. This kind of action would only be done as a last resort. Who would want to sell their silver bangles if they had a choice?

The problem lies in the loopholes. The problem lies when someone is offered money but is not given the promised amount. This is definitely exploitative. This is unethical and nothing short of robbery. But to prevent this kind of cheating, we cannot deprive donors and recipients from a way out of their respective miseries!

People might argue that the people with such problems must be helped in other ways. What ways? Who will help them? It is easy for us to pass judgement while leading comfortable lives but when we try to understand the plight of someone in that situation, we would think differently.

Further, look at it from the recipient's point of view. This could offer a great way to solve the severe shortage of silver bangles among those who need them.

How about making the selling of silver bangles legal? How about having a proper legal framework for this? How about making the cheating donors a legal offense punishable by stringent imprisonment? How about making people abetting such cheats also accountable?

Undoubtedly, there are many problems that might come up. They must be solved rather than imposing a blanket ban! Any legal system will have loopholes which are plugged from time to time on recognizing them. This is the sensible and correct way to deal with the problem.

Sunday, February 17, 2013

The law is an ass

Parmar was a daily wage labourer in the village of Manikour in Rajasthan. He depended on getting some work or the other daily to be able to feed himself and his family. If he did not get work on a particular day, they would all be hungry. It was a pitiable existence. Finally, one day, Parmar and his wife decided that they would sell off a silver bangle his father had left for him, his only inheritance. They would get a few thousand rupees. With that Parmar thought he would buy a bandi, a cart with four wheels and then sell pakodas which his wife would make. That way they did not have to depend on getting some work every day.

Parmar started figuring out how to sell the bangle. He was introduced to Bhola babu by a friend who promised to sell the bangle and get him the money. Bhola babu asked for the bangle and asked him to meet him after a week at a designated spot to collect the money.

After a week, he went. Bhola babu was nowhere to be seen. He contacted his friend. He said he had no clue. Parmar was very worried. Every day for the next week, Parma went to the spot at the same time. No sign of Bhola babu.

Parmar was devastated. He went to the village police station and told the Inspector there what had happened. The Inspector pleaded helplessness. He said until he had some proof that Bhola babu had taken the bangle, what could they do? Parmar was not convinced. He took the matter to the village sarpanch. The sarpanch heard him out and was very upset with the turn of events. He called a meeting of the panchayat and the panchayat decided to ban the sale of silver bangles forever.

Some members protested that just because one person had cheated, how can we ban the entire sale of silver bangles? What about the hundreds of people who had a shortage of money and wanted to sell their silver bangles to feed themselves and their family? Why deprive them the chance of doing this?

Also, what about those that needed silver bangles and were willing to pay for them? Why deprive them too?

"Just because some people were cheated, you cannot ban the whole thing", they said.

The sarpanch was adamant however. The decision was taken. No more silver bangles could be sold. You could gift it to your immediate relatives. If however, a bangle was to be gifted to someone who was not an immediate relative, written approval would need to be taken from the Panchayat who would need to be convinced that no money was being exchanged.

The law in our country is truly an ass.

Wednesday, February 13, 2013

Petition to the Government of India: Abolish taxes on Dialysis Equipment and Consumables

The Government of India taxes dialysis equipment, consumables for dialysis and raw materials imported to make some consumables. Isn't that absolutely fantastic? You can't do anything to reduce our burden. But you will do everything in your reach to make it worse!

This lopsided, irrational and inhuman taxation must be done away with immediately. Do you even realize how much a dialysis patient spends monthly on his treatment? Instead of providing subsidies to all dialysis patients, how can you even think of adding to our burden by taxing these items?

A dialysis patient spends close to Rs. 20,000 only on dialysis every month. The cost of medicines, blood tests, doctor visits and hospital admissions is in addition to this. Due to this, a large number of dialysis patients give up after a few weeks of dialysis and die.

The Government has a tax exemption of Rs. 40,000 under section 80DDB for such people. What is this, a joke? All expenses on medical treatment should be exempt from tax! We should be allowed to produce bills in support of this exemption. I can't believe I am actually paying tax on the amount I am spending on my medical treatment. Isn't something horribly wrong?

Yes, some Governments provide free dialysis under schemes such as Aarogyasri. But that is only for those below the poverty line. Expenses on dialysis can ruin a middle class family's entire financial planning! They do not get any assistance from the Government. Fine, the Government does not have the funds to give everyone free dialysis. Agreed. Why increase the burden? Why make it worse?

We at NephroPlus started a petition to the Government of India in concert with efforts being made by many similar groups in the dialysis industry asking the Government to abolish all taxes on dialysis equipment and consumables.

I earnestly request you to lend your voice to this cause and sign the petition. It takes only a few seconds. Here is the link.


Sunday, February 10, 2013

Despite the risks of more frequent dialysis, I will continue, thank you!

There has been a study published recently that concluded that "dialyzing more frequently may have potential harmful effects on the hemodialysis vascular access." The study acknowledges that "daily or nightly dialysis seems to improve patients' health and quality of life".

Let me state, at the risk of sounding repetitive: if it wasn't for daily dialysis, I wouldn't be alive today! There. Any more doubts? Of what use would an access be if I wasn't alive?

I am leading the kind of life that I am thanks only to daily nocturnal home hemodialysis. I am very clear about it. I would never have been able to survive conventional in-center dialysis. I am a very weak person mentally. Ask me to restrict fluids, fluids are all I can think of. Ask me not to touch fruit. fruit is all I want to have. I am the most non-compliant guy you can find.

I speak only for myself, mind you. I know many people who are leading lives, more normal than me on conventional, in-center dialysis. I have nothing but the deepest appreciation for them. But it does not work for me. Too bad!

I need my idlis with coconut chutney. I need my chilled glass of lemonade every Sunday morning. I need to be able to dig into fruit whenever I feel like it. I need what I need. And daily dialysis gives me that.

Eventually, I am aware that I might develop access problems. I will cross that bridge when I come to it.

Studies like this, in my humble opinion, do more harm than good. Some doctors would potentially be put off by this risk of access problems and not recommend more frequent dialysis for their patients. The benefits of the modality are mentioned only in passing and the entire focus of the paper is access problems. This may be all right when you look at it purely from a statistical perspective. But I am really worried that the paper might have just taken daily dialysis off the menu for some people about to get onto dialysis.

That is sad, indeed.


Friday, February 8, 2013

Unreliable Phosphate Supplement manufacturer

Traditionally people on dialysis have a problem with high phosphorus levels. However, those on nocturnal tend to have a problem with low phosphorus because phosphorus is relatively easily removed on dialysis and with the additional hours, the phosphorus generally tends to go lower than normal.

I have been on phosphate supplementation for many years now and since no supplement was available in India, would rely on a supplement that I would have friends and family visiting India from the US get for me. It was a huge pain as I would need to keep close watch on my stock and a few months before it was to finish, I would start looking for people who were planning to come to India in the near future. Then, I would need to request them to get the medicine. All, very inconvenient.

Recently, I got to know that an Indian company started manufacturing a phosphate supplement called Addphos. I was quite relieved. I would not need to get the supplement I was getting from the US. I got in touch with a vendor and confirmed that they would be able to supply the medicine.

So, a month or so back, even though I realized that I was running out of supplies of my original phosphate supplement, I did not start the process of trying and getting it from the US. Once I ran out of them, I called the vendor and asked him to supply the medicine to me.

Guess what? He said there was a shortage of the drug. I was appalled! I needed it badly! I told him I depended on him and was now without a phosphate supplement! I requested him to arrange some quantity somehow. He said he would call back and then after a day or so said that he could arrange two bottles at a pharmacy and asked me to collect it from there.

The two bottles lasted me a couple of weeks. I ran out of them again. I called him and he said that there is a country wide shortage! I again requested him to arrange at least a few bottles. He said he would get back to me.

This drug has helped get my Phosphorus level back to normal. Now, I am worried that without this, I would have low Phosphorus levels again with all the attendant symptoms!

Sunday, February 3, 2013

Update

My brother Karan, who had come home from the US for cousin Malay's wedding went back this morning. He had to contend with another round of flight delays. Hopefully, it won't be as bad as it was when he got here, when he reached more than 24 hours after his scheduled arrival time!

Thankfully, when I travelled to the US in July last year, my flights were all on time. With the dialysis and all, flight delays would have been harrowing!

The last two weeks, when Karan was here and with the wedding, flew by real fast.

On the health front, things have been pretty stable, touch wood! My Phophorus has been a little low and we've been experimenting with a few things. One is to increase the amount of phosphate solution I am adding to the dialysate. I have also run out of PhosNaK, the phosphate supplement I used to get from the US. These days, there is an oral phosphate supplement available in India too called AddPhos. I have started taking this. The trouble with this however is that it is a new drug and not many doctors have too much experience with it, especially in dialysis patients. So, I am trying 2 tablets twice a day and will check my phosphate levels soon and then see if I need to adjust my dose.

The swimming pool I go to remains closed from December 16th to January 31st every year. The pool has now reopened. Hopefully I should be able to start swimming again. During the time I wasn't swimming, I had started yoga which is a great way to stay flexible and fit.

On another note, the projector I had in my bedroom where I do my dialysis got fried in an unusual voltage surge one evening about a month or so back. It was an Epson projector. They have a really pathetic service setup. No amount of effort could yield any good results with it. The height of things was when the so-called 'authorized service center' in Secunderabad said they were unable to get genuine spares even from the company! How crazy is that? (to use my brother's lingo!)

I got myself another projector and have it all setup so now I can return to watching TV and movies from the comfort of my bed in my room!

Here are some pictures of mine from my cousin Malay's wedding:


My two brothers Prasan, Karan and I on the morning of the wedding


My immediate family
(From right, anti-clockwise, my mother, my brother Karan, my father, me, my brother Prasan, his wife Anjali and their two kids, Naman and Nidhi)


My cousins (three are missing from this picture) - we are all standing in decreasing order of age!


The three bros in suits at Malay's Wedding Reception!