The Invisible Public Health Malady
The photos shown on this page were taken by Kristine Vanijcharoenkarn when she visited the Hemophilia chapter in Vijayawada (Mangalagiri chapter).
When we think of global health, AIDS, malaria, flu, obesity and diabetes come to mind, but what about hemophilia? Affecting only 205,000 worldwide, it is hardly regarded to be on the same scale as diseases like AIDS, which affects 33.2 million around the globe (World Hemophilia Federation, Youth Aids). Precisely because of its rarity, however, hemophilia has struggled to obtain the type of awareness, support, and funding from the medical and public communities which are present for other disorders. The complications of the disease, like any other health problem, are exacerbated in countries with few resources and a developing infrastructure. Even in the U.S., coverage for hemophilia is extremely costly and unaffordable for some families. Yet somehow in a clinic located in rural Mangalagiri, a town of 100,000 nestled on the coast of Southern India, medical service is available twenty-four hours a day, seven days a week for these hemophiliacs (also known as sufferers), and medicine is available for free.
Dr. Prasad Maganti opened his private orthopedic practice thirty years ago, building the clinic as the first floor of his house. When Dr. Prasad heads downstairs at 10 a.m., patients are waiting in line to see him. The first patient is an elderly woman with excessive scarring resulting from a skin graft, the second is a woman suffering from flat foot, the third is a sixty-year-old man complaining of pain in the right hip. The next patient is a sufferer. He is an eleven-year-old boy named Praneeth, bleeding at both the left knee joint and calf muscle. After checking him over, Dr. Prasad prescribes a 319 unit dosage of factor (medicine for hemophilia), injects Praneeth with the factor and sends him on his way. Dr. Prasad sees his patients on a first-come first-serve basis and makes no distinction between his hemophilia patients and orthopedic patients, with one exception. The sufferers do not pay for his services. For the majority of the clinic’s sufferers, who cannot come close to affording the $250 per-dose price tag, this is the only way they can obtain medicine. Such provision of factor and service are made possible largely through a non-profit organization, the Hemophilia Federation of India (HFI) based in New Delhi, India.
The HFI was started in 1983 by a man named Ashok Verma, who had his leg, damaged by repeated bleeds, amputated in Italy because affordable and proper care was not available in India. Upon his return, he began reaching out to sufferers via local newspaper columns. Within a year, HFI was founded. Today, HFI has sixty-three chapters spread across India, helping hemophilia patients afford the costly medicine needed for their blood to clot. Without any of the thirteen blood-clotting factors, a bruise can become crippling and a nose bleed deadly.
Hemophilia results from a genetic mutation on the X-chromosome and is passed down genetically from one generation to the next; although, one third of all hemophilia cases result from spontaneous mutations with no family history. Hemophilia predominantly affects males due to the nature of its inheritance, and occurs one in every 10,000 male births. Hemophiliacs lack the factors VIII (Hemophilia A), or IX (Hemophilia B), with eighty to eighty-five percent of patients afflicted with Hemophilia A, and fifteen to twenty percent with hemophilia B (“Guidelines for Management of Hemophilia in India”).
Dr. Prasad is the father of a hemophiliac born in the late 1970’s, when there was very limited knowledge and medicine available for sufferers, especially in developing countries like India. Due to the disorder’s rarity, most doctors-to-be focused their medical school training on common diseases, such as diabetes, hypertension, and infections. Most doctors did not have the knowledge to treat hemophilia and avoided treating the disease altogether. Some refused to give a factor infusion, fearing the bleeding would continue at the site of infusion. In fact, the factor serves to stop the bleed. In terms of medicine availability, recombinant factor concentrates used to treat hemophilia only became available to the public in the 1990’s (Rare bleedings in Haemophilia). Even today, there is no such recombinant factor in India - it must be imported from abroad. With such difficulties, why does Dr. Prasad do so much to help? “Back then, there was no medicine, no knowledge. I saw how my son suffered,” he says, “I don’t want other kids to suffer the same way.” Hence, the hemophilia chapter in Mangalagiri (also known as the Vijayawada chapter) in the state of Andhra Pradesh was begun in 1994, incorporated by Dr. Prasad into his existing practice. It is now one of the sixty-three chapters stationed around the country.
Without sufficient treatment, hemophilia disfigures and cripples its victims. According to the Hemophilia Federation of India, eighty percent of bleeds in hemophiliacs occur in the joints. Without factor and with repeated bleeds, the joints become permanently damaged. “Joint disabilities are a major problem,” says Mr. Roshan Jameer, office manager of the Vijayawada chapter and a factor VIII deficient patient. “Hemophilia is a rare problem, doctors don’t know what to do, and there is no proper treatment, […] people come to us too late and struggle with their disability.” He goes on to state that thirty to forty percent of the chapter’s patients suffer from joint disabilities due to repeated bleeds. The disabilities make movement and further strengthening exercises even more difficult, predisposing the patient to more bleeds. With the bleeds comes excruciating pain. When Mr. Ramana, a factor IX deficient patient and a member of the central HFI’s executive committee, was asked what the greatest challenge was for hemophiliacs, especially children, without hesitation he replied, “the pain.” The fact is evident; you can see it etched on their faces. The only way to live pain-free is by preventing the bleeds before they start (a system called prophylaxis). Due to the scarcity of resources in India, however, the only solution is to stem the bleeds after they have already begun. With blood factor, the bleeding and the pain last for a couple of days instead of for several weeks.
Mangalagiri is a rural area, and according to records, ninety percent of the chapter’s patients live well below the poverty line of a $2,000 per year income. Seventy percent of the chapter’s patients make an annual salary of a little over $800. According to the clinic, the market price of factor in India costs around eighteen rupees per unit, which translates to about forty-two cents. Praneeth is termed a severe sufferer, with less than one percent of the usual amount of factor VIII activity in his blood. Seventy percent of Vijayawada chapter’s hemophiliacs are severe sufferers. With this level of factor deficiency, spontaneous internal bleeds occur several times a month. To control a bleed, the patient’s factor level must be brought to a minimum of thirty percent. For a forty kg. (eighty-eight lb.) person suffering from factor VIII deficiency, a minimum of 600 units of factor must be used to stop a bleed, translating into a market price of $250 per dose. The greater a person’s weight, the greater the amount of factor needed. However, even 600 units is more than most at the Vijayawada chapter can afford for one bleed, not to mention for the twenty to thirty bleeds that occur per year for cases like Praneeth’s.
To make factor as affordable as possible, HFI does not buy factor from vendors at the market price. For the past twenty years, Baxter pharmaceuticals has agreed to sell factor to HFI at the lowest price in the world - about one third the market price - as part of a mission to help developing countries. Eliminating the middle man, Baxter sells HFI factors directly at 6.25 rs (about thirteen cents) per unit, and HFI sells the factor to its patients at 6.5 rs/unit, earning 0.25 rs/unit. This income, coupled with small donations from abroad and interest from the chapter’s bank account, is used to fund the day-to-day workings of the chapter. Such operations include the $70 per month salary of the HFI office manager, an annual week-end camp for hemophiliac children, and the chapter’s annual meeting.
However, even the reduced factor price is impossible for most patients in Mangalagiri to pay. Only ten percent of the patients at the Vijayawada chapter purchase their factor, with the other ninety percent receiving the factor free of cost. Most of this free factor comes from donors abroad, usually parents of hemophiliacs themselves. This ninety percent of patients at the Vijayawada chapter pay however much they can, usually 300-400 rupees ($8) to help cover the transportation costs of the factor from the donors. “The integrity is there,” says Dr. Prasad of his patients. “This boy,” he says gesturing to a young man in for a check-up, “when he first joined [the chapter] in 2001, he had cut his hands and could not stop the bleeding. We did not have a laboratory then, so I funded him 1,000 rupees to have his blood test [to make sure it was hemophilia]. His mom makes forty rupees a day (about $1), [but] within a couple of months, she had paid it back.” The patient now works as a lab technician in a medical college, making $50 - $60 a month. “I don’t give him free factor anymore,” Dr. Prasad says grinning. “I tell him he has a responsibility to contribute to the chapter now that he can.”
This brings us to yet another dimension of Vijayawada chapter’s success and commitment to helping its hemophilia patients. The chapter has partnered with a program based in the U.S. called Save One Life (SOL), where a sufferer child is sponsored with $250 per year. This money is given to the child in four installments throughout the year, and is used solely for education, including school clothes, transportation costs and books. The chapter keeps a strict eye on the money use, requesting the parents deposit the money into a bank account and bring in purchase receipts and bank slips noting the deposit. “Education is the only way for sufferers to succeed,” notes Mr. Vasudeva Rao, office manager of HFI’s Hyderabad chapter. “We encourage them to become professionals, such as engineers, so that they can afford treatment.” Dr. Prasad agrees, citing the case of a young man who is now finishing his MBA due to the chapter’s help. “Now I give him one to two vials to self-infuse at home before an exam,” he says, “and look what he can do in spite of his difficulties. Soon he will become an earning member of the community”. In the workplace, sufferers are usually terminated because they must incur lengthy and numerous absences during bleeding episodes when they have no factor. A knee bleed, for example, will last anywhere from ten days to a month without factor. During this time, the patient will suffer from intense pain and not be able to walk. With factor treatment and proper home care, the bleed will last for two to three days.
Hemophilia in any part of the world is a challenge, but controlling hemophilia in rural India is even more so. Many patients travel over one hundred kilometers to come to Mangalagiri for a check-up or a factor infusion. Srikanth, a young boy, regularly travels 300 kilometers by himself round trip to receive factor infusions, despite the pain of his joint bleeds. The journey, via public bus, takes a total of at least eight hours. The public transport infrastructure proves to be a further obstacle. Mr. Jameer travels one hour each way by bus every day to come to the chapter. Coming in late one rainy day he declares, “Every bus was full. I had to wait for seven buses for a place to sit.”
Every year, the Vijayawada chapter registers about thirty new hemophilia patients, performing the diagnosis in their own lab. The lab was started in 2003 and uses basic materials and methods. Late one evening a new patient comes in due to an unstoppable bleed following a tonsil removal ten days before (despite three blood transfusions). He has never had any past medical histories of bleeds, or a family history of hemophilia. After the lab test procedure, where clinic staff members drew their own blood to be used as the normal control, the boy was found to be factor VIII deficient, a Hemophilia A patient. In addition, due to the rudimentary blood-screening techniques at many hospitals, there will be a window period of six months before he will know whether or not he was infected with either Hepatitis B or C from the transfusions. Many times, due to the necessity of the transfusion, the blood is given before the screening process is completed. The percentage of hepatitis-infected patients at the Vijayawada chapter is lower than the national average because when possible, vaccinations are given free of charge to the sufferers. The cost usually comes from Dr. Prasad’s pocket. Of Vijaywada chapter’s 477 current members, 300 have been vaccinated by the chapter.
In addition to help from the HFI, there is a little aid from the Indian government, but not much. Of the 75,000,000 people in Andhra Pradesh, only an estimated 7,000 are affected with hemophilia, according to Dr. Prasad. Therefore, there is little incentive for vote-seeking politicians to lobby for the cause. Most hemophilia chapters feel that the only way the factor crisis will be solved is through more help from the government. Other countries, such as Switzerland, Sweden, and the Netherlands buy or produce the factor in bulk and supply it to their citizens. Due to numerous lobbies from chapters (“The government does not listen, but we lobby them every year” Mr. Jameer says), the government is slowly beginning to pay attention. As of July 18th, 2008, the state government of Andhra Pradesh – the location of five HFI chapters - has included hemophilia treatment under the Aarogyasri plan, a healthcare scheme aimed to help alleviate healthcare costs for those below the poverty line. The Aarogyasri scheme, however, only gives $1,600 to sufferer families to use for the entire family’s medical expenses, so usually only a small amount of the fund can be put aside for hemophilia treatment. Nevertheless, some help is better than none. The effectiveness of the recent Aarogyasri plan still remains to be seen.
In the meantime, HFI chapters, such as the Vijayawada chapter continue to provide invaluable services to its patients, both to those who can afford treatment and to those who cannot. Praneeth came back two days later with a gum bleed due to a loose tooth. Immediately, he was given two infusions, sent to a volunteer dentist (a friend of Dr. Prasad’s), and, when he came back again in the middle of that same night because he would not stop bleeding, there was somebody there to give him another dose of factor. None of the clinic staff or Dr. Prasad receives compensation from the sufferer families. Mr. Jameer tells me, “Without Dr. Prasad and HFI, all 400 of us at this chapter would be gone.” It is such dedication to service and true humanitarian spirit that make the HFI Vijayawada chapter a life-saving success story.
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