Access to diabetes care – a long road ahead

“I was seven years old when I was diagnosed with diabetes. I was always just so tired. My Mom would pack two bottles of water for me to just ensure that I had enough liquid for the day at school. My parents took me to see a doctor and then I slipped into a two-week coma. They eventually found out that I had type 1 diabetes.”

These are the words of Sarne Matsumura, 34 years old, from Cape Town, South Africa. She is just one of millions of people who suffer from type 1 or type 2 diabetes, and shared with countless others from low- and middle-income countries, now finds it very difficult to access the treatment she so desperately needs.

A lack of continuous care

At first, Sarne used private healthcare but was later obliged to go to the public health system. She found that: “You have to get there as early as possible because you’re going to have to sit in the queue outside. If you are lucky, the doctor would ask if you had your readings from the glucometer. But they never explained what the readings meant and what trends I should look for”.

Her experience chimes with that of Mercy Annapurna, who now runs the NGO Blossom Trust in Tamil Nadu state in southern India. She has had diabetes for 20 years, and like Sarne, is dependent on insulin.

Treatment and accompanying devices are unaffordable for most people

“When first diagnosed, everyone wants to go to the private sector so that they can receive proper and better treatment”, says Mercy. “But it’s just unaffordable for somebody with no money. I’m still using the insulin injection but I have to buy the needle separately. It was suggested to me that I buy the insulin pen as it’s very effective and doesn’t hurt very much. But it is very expensive: 1,000 rupees for just one pen. This is really expensive, even for a middle-class family.

And it can only be used once: once I use it, I have to throw it away. Syringes don’t cost very much, but it is dangerous, you could probably overdose. The advice is to use the needle only three times, but I use it at least ten times. I cannot afford to change the needle so often.”

Sarne also emphasises how challenging it is to receive the medicine she needs. “In South Africa you have to show why you need to be on a sensor to manage your sugars better. In the private sector you can have access to a newer form of insulin with an insulin pen that lets me eat straight away. But in the public sector, you have to wait about 15 or 20 minutes before eating.”

Poor availability of high-quality diabetic medicines in India

A further obstacle is the poor quality of the medicine itself in the public sector. Mercy is unambiguous about this, “When it comes to medicines and drugs, they are not all of good quality [in India] and they don’t reduce the sugar level in your body. The delay in diagnosis also definitely influences the disease,” she says.

Healthcare professionals are also acutely aware of these challenges. Sister Buyelwa Majikela-Dlangamandla is Diabetes Co-ordinator at Groote Schuur Hospital, Cape Town South Africa. She trains healthcare professionals about the disease and undertakes patient counselling for the condition.

Patients can have complications before diagnosis

“Screening people early enough is a big problem and some already have complications by the time they are diagnosed. Blood sugar levels can be sky high, but you may not feel ill or feel any symptoms. Most healthcare workers aren’t trained in diabetes and the clinics are overcrowded. Patients don’t even understand how to take their treatment, and many are getting unnecessary complications from diabetes, blindness, renal failure, and amputations.”

Poor drug compliance

Dr. Raja Sakkarapani is a diabetologist and geriatrician, and senior assistant professor in Chennai medical college, India. “With greater urbanisation,” he says, “People work between 6am and 10pm, so the prolonged working hours and stressful conditions mean people eat more junk food. Drug compliance is poor and too much time passes between visits to the clinics.”

As patients, both Mercy and Sarne are determined to ensure that the standard of diabetes healthcare improves in their respective countries. “Many people with diabetes live below the poverty line but because there is a stigma attached to accessing resources from the government sector, they often won’t go to private hospitals to get treatment because of the high cost involved,” Mercy says.

Tackling the stigma of diabetes

Sarne is equally committed to campaigning for change. “In terms of awareness, rights, and teachings around diabetes I just don’t think it exists,” says Sarne. “There’s not enough information and some people also live with a diabetes stigma. We do a lot of diabetes advocacy and speak out about access to medical supplies, especially for people in disadvantaged areas, and continuous glucose monitoring devices.”

Both patients and healthcare professionals alike are clear that one factor above all else must change: the cost and quality of the medicine itself. Diabetes patients must have greater access to more affordable and better treatment. The MPP licensing process is designed to catalyse such a change and is an area in which MPP’s work could contribute to bringing transformational benefits.

As Dr. Sakkarapani says: “Once the patents for some originator drugs have ended the government can discuss patency with generic companies. This should mean that poorer people have greater access to affordable and effective medications.” Licensing by MPP, however, would enable more affordable generics or biosimilars to enter the market before patent expiry.

Strong advocacy required

Mercy is also clear about what is needed: “Strong advocacy is required to change this, which can be done only by the communities. MPP can give licenses for more generic medicines so that our Indian diabetic patients will always be thankful to them. We’ll always be thankful to MPP.”

MPP has been involved in the fight against diabetes for several years now. We signed a Memorandum of Understanding with the International Diabetes Federation in 2020 and, since its inception in 2021, we are part of the WHO Global Diabetes Compact Forum. We are also clear on our focus for the future: securing licence agreements with originator and generic manufacturers, and working with partners for improved access to priority diabetes medicines in low- and middle-income countries.

More on MPP’s work in diabetes