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Dr. Sharad Pendsey is a physician based in Nagpur, India. Pendsey recalls the story of a girl named Sudha who came to him when she was eight-years old. Sudha had just been diagnosed with type 1 diabetes. When she was discharged from the hospital, Pendsey explained to Sudha's impoverished parents that she would have to take insulin to stay alive. Pendsey recalls Sudha's parents asking, "Doctor, if I understand you correctly, Sudha has to take insulin every day for the rest of her life?" Pendsey nodded yes, and said that Sudha would die if she didn't. The parents understood the predicament, but could not afford the cost of her insulin. One month later, Pendsey learned that Sudha had died.
Over 50 Percent of a Family's Income
Beef insulin costs about $1.50 for a 40-unit bottle in India, and beef/pork mixtures go for around the same. A 40-unit bottle of pork insulin costs about $3.20, while a 40-unit bottle of human insulin sells for $5. The average Indian family earns an income of $28 (U.S.) per month, and even less in smaller towns and villages. If a type 1 uses approximately three vials of insulin per month, he or she could spend between 10 and 25 percent of their monthly income on animal insulins. If they use human insulins, they could spend over 50 percent of their monthly income.
Despite this reality, the World Health Organization (WHO) has recommended the universal use of U-100 human insulins, and Eli Lilly has removed animal insulins from most world markets. Indians fear that this removal of animal insulin would impair their control and place an even worse financial burden on them.
"If any recommendations to change to U-100 insulins and/or phase out animal insulins is made, I feel this will be a major disaster to most of the diabetics of India," says Dr. S.M Sadikot, chairperson for the Indian Task Force on Diabetes.
India is just one country where poverty keeps a person with diabetes from taking their life-saving insulin. In other less-developed countries insulin is scarce. In India, however, it is widely available and is sold by Novo Nordisk, Eli Lilly and Aventis. There are no fears about a shortage of insulin in India in the foreseeable future. If an Indian with diabetes does not get their insulin, it is a question of economics. In other countries, however, it is a question of several other factors.
Estimates suggest that there are currently 120 million people with diabetes in the world, and that number will double by the year 2010. According to a 1997 International Diabetes Federation (IDF) Task Force survey, it was reported that "15 countries [out of 73 countries surveyed] have severe problems with access to insulin." The survey revealed that insulin access was greater in urban, as opposed to rural, areas in most countries. The main barriers to insulin access were affordability, distribution and transportation. Other barriers include luxury tax laws and war.
Jak Jervell, president of the IDF, points out in a 1996 edition of Diabetic Medicine that in 1993, 150 billion units of insulin were used worldwide. Of these, 70 percent were used by industrialized countries (i.e., the United States, Germany) and 30 percent were used by less-developed countries.
"The problems for a person with type 1 diabetes in a poor country are not only those of obtaining insulin and proper diabetes care," writes Jervell. "The drain this disease causes on family resources is underestimated."
Free Enterprise Does Not Mean Free Insulin
Russia is another country whose diabetic citizens have restricted access to insulin. Fifteen years ago, under communism, Russia supplied medicine, including insulin, to people who needed it. When communism collapsed and free enterprise moved in, the situation in Russia changed, and only people with money could afford insulin. Today, almost the entire supply of Russia's insulin comes from abroad, and the government is having trouble finding the hard cash to pay for it.
"In Russia, salaries are very low, and very often people are not paid for their work," says Sergey Zemlinsky of Moscow, whose three-year-old daughter has type 1 diabetes. "The average monthly salary in Moscow ranges from $50 to $100 (U.S.). These amounts decrease every day because of inflation."
Zemlinsky says that his daughter is provided free insulin because she is considered an invalid. Zemlinsky makes $125 per month, and receives $20 a month in state benefits because of his daughter's condition. He adds that insulins that are used in Russia include Regular and NPH made by Eli Lilly and Novo Nordisk. In Moscow pharmacies, Regular and NPH insulins cost around $25 per vial. Humalog is basically unavailable in Russia, but if it can be found it runs for around $30 per vial. UltraLente is not available anywhere.
Sam Wentworth of the Indiana Diabetes Youth Foundation says that animal insulins are available in Russia, but most Russians feel that animal-source insulins are really bad for you.
"This is due in part to human insulins being marketed so well in Russia," says Wentworth.
Demand, But No Supply
According to Natalya Shulyakovskaya of The Moscow Times, Russia needs about $100 million a year to provide its 2 million insulin-dependent diabetes patients with the drug.
"Some people are rationing their insulin for fear of running out altogether," writes Shulyakovskaya. "Doctors in some clinics have reported seeing patients who have allowed their sugar levels to get dangerously high."
Svetlana Zavyalova used to lived in Moscow. Her youngest son, Sergey, was diagnosed with diabetes in April 1993. Sergey, then six years of age, was given a "retirement certificate" which is given to people in Russia when they reach retirement age and can begin collecting pension.
"It was written on his certificate that he was an 'invalid from childhood,'" says Zavyalova. "Thus, at the age of 6, my son, who had never even had a running nose before, who was very lively and very smart, was 'removed from active life for reason of disability.'"
Sergey, like all other Russian children with diabetes, was given free insulin at the district clinic to which he was assigned. He also received disposable syringes that were imported from Yugoslavia. Svetlana was told to conserve Sergey's disposable needles by using them at least six times.
"After the first use, the needles became sticky, and by the fifth or six injection the procedure became very painful and left blue spots on Sergey's skin," says Zavyalova, who finally emigrated to the United States with her family in 1996.
In 1998, only $30 million was spent on importation of insulin to Russia, and Russians anticipate that number only getting lower.
"Insulin affordability depends on the dollar-to-ruble exchange rate," says Zemlinsky. "After the ruble plummets, insulin disappears."
Zemlinsky says that the situation for people with diabetes outside Moscow is much worse. While people in Moscow use insulin from Novo Nordisk and Eli Lilly, people in the rural areas are provided insulin that is produced in Russia. He adds that according to the ex-Minister of Health in Russia, there are no records of insulin availability in the remote areas.
Zavyalova feels that the situation for people with diabetes in Russia will only continue to get worse.
"I recently received a message from a family in Moscow who told me the story of a single mother with a diabetic child," says Zavyalova. "[The mother] lost her job after the financial crisis of August 1998, which leaves her with a pension of 400 rubles [$18.11 U.S.] per month. The state still pays for her child's insulin, but it makes me wonder, could she buy insulin if she had to? I cannot imagine what she must be going through."
Insulin For Life in Central America
According to the IDF Task Force survey, in 40 of the 73 countries surveyed, people with diabetes said that they were able to buy insulin at a lower price than what it would cost in a pharmacy because it was subsidized by national and local governments, special programs and private donations.
Martha Stabler is the program director for an organization that helps facilitate donations of insulin to underdeveloped countries. Insulin For Life (IFL), a non-profit organization headquartered in San Francisco, was started by the late Robert Greenberg after he visited a health clinic in Nicaragua. While he was at the clinic, Greenberg overheard a nurse on the telephone frantically searching for a bottle of insulin for a man named Antonio, who was unconscious and dying. Greenberg, who always carried a few extra bottle of insulin with him when he went on trips outside America, handed one to the nurse who used it to save Antonio's life.
"Antonio had a wife and two sons who felt that a miracle had taken place because of Robert's gesture," says Stabler, who explains that Greenberg subsequently discovered a critical insulin shortage in his travels through El Salvador, Guatemala and Nicaragua.
Upon returning to the United States, Greenberg decided to find a way to procure and distribute insulin to hundreds of people with diabetes in Central American countries. Since 1987, IFL has distributed 10,000 bottles of insulin to low-income people with diabetes in Central America.
"Taxed as a luxury item in most Central American countries, insulin is a precious commodity, often impossible to obtain, and dangerously rationed by families when available," says Stabler, whose IFL all-volunteer board purchases Actrapid and Insulatard insulin from Novo Nordisk of Denmark at less than $5 a bottle. The organization then ships the insulin to doctors in Guatemala, the Red Cross of Nicaragua, and the Diabetes Association of El Salvador. "A vial of these insulins in Central America would cost about $15, which is equivalent to one week's salary for the average worker in most Central American countries.
Stabler adds that there are an estimated 13 million cases of type 1 and 2 diabetes in Latin America and the Caribbean, and that number is expected to rise to 20 million.
War as a Barrier to Access
According to the World Health Organization (WHO), economics is the major barrier to insulin access in most countries. Lack of transportation, distance from urban areas where distribution takes place, and lack of electricity and refrigeration for insulin storage are other inhibiting factors.
War also makes treating diabetes a difficult task for Central American countries
"Decades of civil war and violence have destroyed the infrastructure of these countries and left hospitals, clinics and the healthcare systems in shambles," says Stabler. "After the Contra war ended, much of the financial aid went into strengthening the military and fortifying postwar governments. Due to the extreme poverty in this region, insulin became a luxury available only to the rich."
Not a Luxury Item
Ron Raab, president of Insulin and Diabetes Supplies for Life (Australia), Inc., says that the World Health Organization has listed insulin as an "essential drug," and should therefore not be taxed as a luxury item. Several countries, however, still tax insulin. The Philippines is one of those countries
"The tax on insulin in the Philippines is anywhere between 10 and 20 percent," says Raab. "If you are rich and living in the Philippines, this is not a problem, but if you are poor, then insulin becomes something that you cannot afford."
According to Teresa P. Que, MD, a Filipino endocrinologist, NPH insulin is available in 40 and 80-unit strengths. She adds that 40- and 80-unit animal insulins are also available, but to a limited scale.
"The demand for animal insulins has gone down because of educational campaigns being launched against the use of animal insulins," says Que, who adds that most insulins in the Phillipines are available for about $18 (U.S).
According to Raab, the average worker's income in the Philippines, is roughly $100 to $200 per month. He points out that most Filipino people with diabetes are reliant upon insulin donations from the wealthy people of the Philippines, as well as from people and companies abroad.
"About 50 percent of all insulin is donated from private individuals," says Raab. "The other 50 percent comes from Eli Lilly and Novo Nordisk."
Que points out that geography and transportation are other factors that keep less affluent Filipinos with diabetes from getting their insulin.
"Those who are living in the remote areas and barrios may not be able to get the medical attention they need, and will usually just die," says Que. "They do not have money to buy insulin, and they may not even have transportation fares to attend the clinics regularly."
Raab estimates that in the past 15 years, about 45,000 vials of insulin have been donated from Eli Lilly and Novo Nordisk. He emphasizes that the donated insulin is usually about one year after its expiration date, but is still potent.
Que is one physician who has received donated insulin from Raab's organization. She says that Filipino physicians have misgivings about using expired insulin, but concedes that expired insulin is oftentimes better than no insulin at all.
"The insulins have helped a lot of my patients," says Que. "As a rule, I prefer in-date insulins, but I have been given some expired ones which I gave to those who really cannot afford [in-date insulins]. They have worked just as well."
Raab agrees with Que, saying "I have always felt that if death is the only alternative for a person with diabetes, then morally and ethically they should get insulin."
A Death Sentence in Africa
Africa, the second largest continent on earth, is home to 60 nations. According to an article titled "Diabetes in Africa" which ran in a 1990 issue of Diabetic Medicine, there is a belief that in the developed world "diabetes affects only the affluent...and is therefore a low priority." The truth of the matter, however, is that natives of sub-Saharan Africa are far from being immune from the ravages of diabetes.
According to the WHO, in some parts of Africa the mortality from insulin-dependent diabetes is estimated at 50 percent in the first five years of the illness. In many African countries, insulin-dependent diabetes is a death sentence since the insulin may be unavailable or beyond the purchasing power of the patient's family.
"The average worker's income in a lot of African countries is $160 to $200 per month," says Arthur Teuscher, MD, of the Nutrition and Diabetes Foundation (NDF) in Bern, Switzerland. The NDF, now in its sixth year, is an organization that helps send insulin to third-world countries that have insulin shortages. The NDF serves 800 African people with type 1 diabetes.
One of the keys to the success of NDF program has been Teuscher's success in finding affordable insulin on the international market. The NDF developed a cost-sharing program with the city council of Dar es Salaam (a sub-Saharan African town) that supplies insulin to people with diabetes living in the city. As part of the cost-sharing program, the patient with diabetes contributes 50 percent of the cost, while the NDF contributes the other 50 percent. The city council of Dar es Salaam covers the cost of clinic staff. As a result of the program, some diabetic patients pay only $1.25 for a 400-unit bottle of insulin.
Teuscher points out that Africans who do not have access to the cost-sharing project spend upwards to $10 for a 400-unit bottle insulin that is manufactured by Eli Lilly or Novo Nordisk. This comes to approximately $300 per year. He adds that most Africans with diabetes who cannot afford insulin try to get along with smaller insulin doses.
"Most of them do not survive though," says Teuscher. "This may be one reason why prevalence of type 1 diabetes in black African countries is very low."
At an IDF conference in Helsinki, Finland, a few years back, Raab advocated the use of "animal rather than human insulin, where there is a significant difference in price." According to Teuscher, the British Boots Company of India used to sell 400-unit bottles of beef insulin for $1.25. Teuscher points out that there is no more Iletin I insulin available since Lilly removed it from the world market, and that the British Boots Company does not have the resources to manufacture the more expensive human insulins.
"Among the many ethnic groups in Tanzania, there is a large Moslem population who prefer beef insulin," says Teuscher. "I was told that in a critical situation, Allah would also permit pork insulin."
In Cameroon, insulin is considered an essential drug, however, the government does not purchase insulin for its patients with diabetes. Therefore, patients have to pay for everything.
A Top Health Priority in Brazil
Brazil's minimum wage comes to about $70 per month. A bottle of Humalog insulin can cost up to $35 (U.S.) in Brazil, or half of a minimum-wage worker's monthly income.
"Most of the diabetic population cannot afford this," says Eduardo Netto, an aerobics instructor who lives in Rio de Janeiro. Netto say that he still manages to purchase insulin every month despite its high cost. "It's something that you have to learn to deal with because it's your health. I just have to save money on something else."
According to Rosangela Rea, a Brazilian doctor, a vial of insulin costs about 20 percent of the average worker's income in Brazil.
"I estimate that only seven-to-nine percent of Brazil's insulin-dependent diabetics are treated with insulin," says Rea.
Insulin Readily Available
In countries like the United States, Australia and New Zealand, the problems with getting insulin are entirely different than the ones that Russian, African, Asian-Island and Central American countries must face. According to Murray Jones, executive director of Diabetes New Zealand, insulin in New Zealand is readily available. Australia is subsidized either through government or insurance companies, and costs a maximum of $3 (U.S.) per vial (or 0.12 percent of an average monthly salary).
Spokespersons at the IDF, IDI and IFL organizations suggest that insulin donations and education activities from donor countries are necessary for proper treatment of diabetes in insulin-deprived countries.
Robert Dixon is a private citizen with diabetes who lives in Soquel, California. A few years back, he met Ron Raab. Dixon had read about Raab's insulin-donation program, and asked what he could do to help out in the United States. Today, Dixon facilitates donations of insulin, and sends them to Raab's organization in Australia for dispersal throughout the Philippines, Bangladesh and Cameroon.
"Mostly, the donations that I receive are from people who are switching to another form of insulin, so they have extra supplies and want to get rid of them," says Dixon. "Some months, I get a lot of donations, and then the next month I won't get any."
Robert Dixon can be contacted at 408-479-7837 (call). Donated insulin can be shipped to:
3470 Crestline Way
Soquel, Ca. 95073