STORY OF IGNORANCE, GREED AND SUFFERING
Let us call this South East Asian country, Srivijaya. Charming people, wonderful smiles, tolerant of others, they had suffered greatly through colonial and postcolonial brutalities.
In the last 10 years, there has been unbridled, uncontrolled, ill charted growth and development, mired in corruption and non-transparency.
Infrastructure that allows the bourgeoisie and politicians to increase their wealth, in tandem with the total, wanton neglect of the welfare of the poor, who constitute the majority of the population.
Health care was totally neglected, and those who had a little income (average wages are below 100 USD per month) could see a doctor in private practice who may give injections or fluid therapy, at proportionately tremendous costs. Among those with access to money, they fly off to KL, Singapore or Bangkok for their medical care, without realizing that these places offer better technical medical care than is available in Srivijaya but not better humanitarian care. I am told of many stories of those who went off to Singapore or Bangkok, only to return with a slew of new medications and investigations that the local doctors couldn't follow through.
I give a case history of suffering but of successful outcome of a Srivijaya resident, thanks to my friends, Drs W and H, in Miami.
This 42-year-old man, who has been in perfect health, began noticing increasing fatigue and weight loss, towards the end of 2013. The city where he lived, which is very popular with western tourists, lacks easy access to medical care, except for a private hospital staffed by Australian doctors with a very bad reputation. He decided to go to the capital city where he was advised to see a Gastroenterologist, since his complaints were weight loss, vague abdominal pains and fatigue.
The Specialist physician carried out an Upper GI (stomach) and a lower GI (colon). As is the case with many people who are leading lives peppered with low fibre, high sugar food, the specialist found Gastritis and Diverticulosis. As he had noticed a high White Cell count, the specialist prescribed in addition to Proton Pump Inhibitors (Prevacid is the name of the medication in the USA) and also triple antibiotics for presumed Diverticulitis! My friend took these medications faithfully but found that at the end of the month, his symptoms had not improved. The specialist had requested some blood tests and once again it was noticed that the White Blood Cell counts were inappropriately elevated (close to ten times the normal). At that time, he got in touch with me through email and I talked to him on the telephone and I suspected that this did not sound like Diverticulitis but something more sinister in which faulty production of the White Blood Cells were involved. I encouraged him to go Bangkok for further investigations. He referred himself to a doctor in Bangkok (I do not have any medical contacts in Bangkok), who turned out to be a GI specialist, since my friend was thinking that the problems lay in his Gut, who repeated the endoscopic studies done in the capital city of Srivijaya, and proudly confirmed the diagnosis. But the concerned doctor noticed that the White Blood Cell count now exceeded over 100,000, abnormally high and referred the patient to a Haematologist, who admitted the patient to a hospital and within a day had the correct diagnosis, after a bone marrow biopsy.
My friend waited out the results in a hotel in Bangkok, only to be told that his condition was,
Chronic Myelogenous Leukaemia, with Ph+ positive, with BCR-CHL divergence of 90% (these are extremely sophisticated studies).
The haematologist prescribed Hydroxyurea as a stopgap measure to bring down the white blood cell count while waiting for the definitive treatment with expensive medications that were available in all the countries in South East Asia with the exception of Srivijaya. The doctor did give hope that if he were to take these medications on a regular basis, there is a high chance he would be cured.
I was in touch with him through this period on email and telephone. Surprise was in store for my friend when he enquired at the pharmacy about the medication prescribed for him, back in Srivijaya. He was told that they could procure the medication for him for $175 per pill! And the payment has to be in cash!
The price of the medication was similar in Singapore, Kuala Lumpur or Bangkok!
Like many busy administrators, he was not aware of the seriousness of his condition and once again we talked. He wondered whether he could just take Hydroxyurea and not worry about the new medication prescribed for him. He has been feeling better since he began taking it.
Right about this time, I had read about a court case in India, where a western pharmaceutical company had given up suing the government for breach of patent. The lifesaving medication, the name I couldn't remember was being distributed as a generic in India.
Once I had all the investigations, scanned to me, on hand, I contacted two good friends of mine in Miami, Drs W and H, one of whom is a professor of Haematology at the University of Miami.
Where could we get the life saving medication for our Srivijaya friend? A telephone call to a pharmacist in Bangalore in India gave us the breath of life, I clearly remember the relief I felt when the pharmacist told me that this medication is available in blisters of 10 for 1523 INR (about 25 dollars, i.e. $2.5 dollars each!), a fraction of the price in the pharmacies of the south east Asian nations! Thank you, India!
The name of the medication is Imatinib, 400 mg in strength, marketed as Gleevac in the USA.
Imatinib was invented in the late 1990s by scientists at Ciba-Geigy (which merged with Sandoz in 1996 to become Novartis), in a team led by biochemist Nicholas Lydon and that included Elisabeth Buchdunger and Jürg Zimmerman and its use to treat CML was driven by oncologist Brian Druker of Oregon Health & Science University (OHSU). Other major contributions to imatinib development were made by Carlo Gambacorti-Passerini, a physician scientist and hematologist at University of Milano Bicocca, Italy, John Goldman at Hammersmith Hospital in London, UK, and later on by Charles Sawyers of Memorial Sloan-Kettering Cancer Center. Druker led the clinical trials confirming its efficacy in CML
In 2013, more than 100 cancer specialists published a letter in Blood saying that the prices of many new cancer drugs, including imatinib, are so high that U.S. patients couldn't afford them, and that the level of prices, and profits, was so high as to be immoral. [They stated that in 2001, imatinib was priced at $30,000 a year, which was based on the price of interferon, then the standard treatment, and that at this price Novartis would have recouped its initial development costs in two years. They stated that after unexpectedly becoming a blockbuster, Novartis increased the price to $92,000 per year in 2012, with annual revenues of $4.7 billion. Other doctors have complained about the cost.
We were able to arrange the delivery of medications on a regular basis to Srivijaya at $40 per blister pack of 10 tablets. He gets 50 tablets at a time, delivered to him by air, he has never ran out of medications.
I made arrangements to visit him at Srivijaya in March 2014, adding a side trip to my visit to SE Asia. I reviewed his laboratory tests and was very pleased to see that the white cell count has steadily decreased and now hovered around 6000!
Two months later (May 2014) the patient from Srivijaya got in touch with me again with a slew of questions.
How long do I have to take Imatinib?
When do I need another Bone Marrow Biopsy?
Should I go back to the doctor in Bangkok who did the bone marrow biopsy?
During the last week of May 2014, I had scheduled a visit to my good friend in Indonesia, the humble man of Bogor. American Indians say that things happen for a reason, and that we are not smart enough to decipher why most of the time! Few days before my appointed travel towards Singapore and Jakarta, my friend was summoned by the Ministry of Agriculture to be present at the meetings of visiting specialists, that would take him away from his home and work. Visiting him and his family and staff is one of my highlights of a visit to South East Asia. As I had already booked my tickets to Singapore, I decided to go to Srivijaya instead to visit and counsel my friend with CML who was taking Imatinib! I tried to visit a project I was involved in another country but the coordinator was out of the country during that period.
I had an uneventful flight from Havana. Havana-Miami-Newark-Hong Kong-Singapore. After arriving in Singapore at 12 30 AM, I was able to book a ticket to his city that very same morning.
It was as if I was supposed to be here, I had been there two months before. I spent time visiting friends, old and new. This visit was more than a social visit.
With the help of my friends in Miami, we were able to chart a course of treatment for him, with follow up tests to be carried out at regular intervals. Since there were no adult haematologists in all of Srivijaya, and the country does not have infrastructure to do the sophisticated blood tests (called FISH), we found out that it is possible to get the tests done in Ho Chi Minh City in Vietnam! His Family Practitioner in Srivijaya was a retired French doctor who confessed that he knew nothing about his illness. I left Srivijaya leaving detailed instructions for him for follow up (as given by my friend in Miami). And to find a concerned and interested Family Practitioner in his town!
Dr H was head of Haematology as well as Internal Medicine at the University of Miami/Jackson Memorial Hospital when I was a student there. His dedication to International medicine was exemplary, and I was influenced by it. I had a chance to work with him a little, organizing a connection to Jamaica.
The doctor friend who helped me in Miami was none other than the son of the above professor!
I sat down on banks of the river not too far from the river and offered a prayer of gratitude. I felt so humble and elevated in spirit, that I had to hold back my tears!
A Kaddish for all my illustrious teachers: Dr H, Haematology, Dr L, Oncology, Dr R, Endocrinology all from University of Miami and Dr H, Medical Anthropology from London
Just this morning, I received eCopy of NEJM for July 3, 2014
There is an article on Putting quality on the Global Health Agenda
from Harvard University. An Interesting article. I would just quote one line from it.
In a study involving standardized patients in INDIA, nearly 7 out of 10 medical providers failed to ascertain the basic pertinent history for common ailments such as angina, asthma, and childhood diarrhea and incorrectly diagnosed a large majority of cases!