The State’s Role in the Care of T1D Persons
Sir Frederick Grant Banting , a Canadian medical scientist, physician, painter, and Nobel laureate and discoverer of insulin said about the sale of the patent of insulin for $1, “Insulin belongs to the world, not to me.”
Are we still respecting this honorable sentiment and gesture of Banting and making insulin available to T1D persons free or at negligible costs so that they can lead productive lives, without the stress of having to pay huge bills for insulin and the supplies needed for diabetic management?
It is ironical that we needed a pandemic to make the world take a serious look at incidence of diabetes among millions of people across the world and their need for insulin as well as devices that help with effective management of diabetes. According to WHO, diabetes is the seventh leading cause of death globally and a major cause of costly and debilitating complications like heart attacks, stroke, kidney failure, blindness and lower limb amputations. There are more than 420 million people living with diabetes and this number is estimated to rise to 570 million by 2030 and to 700 million by 2045.
People with type 1 diabetes need insulin for survival while people with type 2 diabetes need insulin for controlling blood glucose levels to avoid complications when oral medicines become less effective in the progressive course of the illness. Only about half of people with type 2 diabetes in need of insulin can access it.
Lack of access to insulin is largely due to high prices and supply challenges. Insulin originator companies control 96% of the global market, setting prices that are prohibitive for many countries. Access to delivery devices for insulin and basic technologies such as blood glucose testing is also limited. Without access to health products for screening, diagnosis, and treatment and control and to health professionals trained in managing diabetes, premature mortality due to diabetes cannot be reduced.
World Health Organization reports that there is not enough progress in countries in meeting the health-care needs of people living with diabetes.
During the current COVID-19 pandemic, many people who need treatment for diabetes are not receiving the health services and medicines they need. People with diabetes are at increased risk of severe disease and death from COVID-19. Immediate action to correct this is needed as part of the COVID-19 response.
Improving access to insulin and other health products for diagnosis, monitoring and treatment of diabetes is complex, and interventions require collaboration for greater impact.
The price of insulin in 2018 is an extremely controversial issue. According to the American Diabetes Association between 2003 and 2012 the price of insulin in the U.S.A tripled. This has made this life-saving medication difficult and sometimes impossible to afford for those with Type 1 diabetes. Not to mention the cost of other equipment and devices to monitor blood sugar levels and administer insulin. Even in Canada, where Banting first introduced insulin, insurance does not always cover the total cost of insulin and many people have to pay out of pocket. This greatly affects people with diabetes who are in low-income bracket.
Insulin is a question of survival for T1D persons. It is a life-saving drug and should be available free in all countries. Not only is it important to enable access to diabetes treatment including insulin, delivery devices , screening and diagnostics, it is important to improve affordability of these consumables and governments should provide insulin free to all T1Ds, irrespective of their economic status.
There are numerous instances where young Type1 diabetic persons who lost their jobs in the US, lost their insurance and tried to be frugal with the limited supplies of insulin. This led to diabetic ketoacidosis and death of young and productive persons. In India, many Type1 diabetic persons from impoverished families have a poor quality of life, with lack of access to healthy nutrition, insulin and monitoring of blood sugar levels. This will lead to stunted mental and physical growth, and several complications at a very young age in such persons.
Life, safety and security of people are the state’s responsibility and these human rights cannot be denied to people with special needs. When insulin is as important as oxygen to humans, it is imperative that governments take the responsibility of providing free insulin to children with Type1 diabetes, to ensure they get equal opportunities as any other healthy individual to study, work and live healthy lives.
If vaccine for Covid-19 can be supplied free to millions and millions of people, by the same logic, insulin must be provided free and governments should also make delivery systems and devices for diabetic management accessible and affordable. Even for middle class families of India, this is necessary as diabetes management imposes a heavy financial burden on them since the insurance industry has not evolved when compared to that of advanced countries.
Foundations and hospitals across India have schemes for poor children like ‘Direct” of Dr. Mohan’s Diabetes Specialities Centre to supply free insulin and blood sugar monitoring consumables as well as diagnostic tests to poor children. They have donors who contribute toward this cause. But this alone is not sufficient. It is time the Indian government takes a serious look at the non-communicable diseases scenario in the country and takes a progressive step toward enhancing the health of its citizens.
If it means supplying free life-saving drugs, devices and consumables to persons affected with such afflictions and those with special needs, it has to be done. There is no two-ways about it. It is the duty of an elected government of a democracy to safeguard the lives of its citizens. There should be no compromise on this
As for countries like the US and Canada, it is high time they too acted swiftly to save thousands of young lives by making free insulin and other paraphernalia for diabetes management accessible to people.
As a first step, parents of Type 1 diabetes persons, their partners and families should come together to raise a clamor for free insulin and diabetes management necessities. Until then we cannot rest!
Thank You Doc!
On a parting note, I would like to thank Dr. V Mohan for providing me the opportunity to write this blog series. It has made me more aware of the intricacies of Type 1 diabetes today, especially given the pandemic, and made me more determined to take up the cause of campaigning for free insulin, delivery systems and devices for diabetes management.
Dr. V. Mohan has been our daughter Niky’s doctor, guiding her through her teen years for well over a decade and has become a revered, trusted and much respected person in the lives of my husband, my second daughter and me. Our family is totally indebted to him and his team. We consider ourselves fortunate that we have had him as our guidepost when we started out, totally devastated, confused and afraid. He gave us the confidence that we can manage diabetes for our daughter and hope that she would be able to lead a good and near normal life.
He is the one who instilled hope and belief in Niky that she could do whatever she desired and that has played a huge role in her evolving as a journalist, author, singer and a champion for autoimmune conditions. His mentoring has given her the fortitude to contend with the innumerable challenges that she has been assailed with in her young life. Dr. Mohan’s book, ‘Making Excellence a Habit’ is ample testimony to his contribution as an eminent diabetologist, not just in India but the entire world. More than anything else, it brings out the fact that he is a humane person first and then a doctor. I convey my gratitude to Dr. Mohan and his dedicated team that continue to render yeoman service to the diabetic community.
I dedicate this blog series to all parents of type 1 diabetic children and those who have lived with type1 diabetes, fighting innumerable challenges, but trying to live with a positive attitude and courage. In the years to come I hope and believe that humanity realizes the need to enable those with special needs to have access to all that is essential for them to lead healthy and happy lives. At the end of the day, humanity is what matters. And the present times have proved that.
Thank you,
Swati Amar
