A few months ago, I was in Morocco on a work trip and arranged, through Life for a Child - the international program for children with diabetes – to meet with Dr. Amina Balafrej, a paediatrician, in Rabat, the country’s capital city.
Balafrej works with a local association, Badil, established 12 years ago by volunteer doctors and parents of children with type 1 diabetes. It’s a remarkable group, with some important organizational innovations that others could learn from.
First, the background.
Badil’s staff of five volunteer physicians, along with a paid diabetes educator, dietician, and volunteer social worker, care for about 900 children with type 1 diabetes, all of whom were diagnosed before the age of 15. Some 400 are directly cared for by the association, while another 500 visit Badil from the local government hospital, where they are patients of Badil’s physicians. Life for a Child sends money to help 35 of the poorest families with their most basic diabetes, including insulin, syringes, and two blood glucose test strips a day.
Badil plays an important role in the lives of these parents and kids, because only 50% of Morocco’s population is covered by some form of health insurance. Yet even insured families have a hard time getting proper diabetes care. For example, many Moroccan insurance plans do not cover blood glucose test strips or syringes, and the only insulin available in most government dispensaries is the long-lasting, NPH type. This is because the much larger type 2 population uses long lasting insulin, and this population’s needs tend to predominate. Rapid acting insulins – the kind type 1 patients need to survive- are often not available in government dispensaries.
The fancier analogue insulins common in the global North – Lantus, Levemir, Apidra, Novo Rapid – are too expensive to be distributed through public facilities, although better off patients can easily buy them, along with blood glucose test strips, in the country’s many private pharmacies. In addition, “the better educated, more literate and wealthier families get better access to government care,” Dr. Balafrej said, because they have the skills, confidence, and connections to work the system. Getting reimbursements through public insurance plans, for example, is a huge paperwork challenge, requiring literacy, oodles time, perseverance, and lots of self confidence.
For patients who are illiterate, record keeping – so crucial to proper diabetes management – is especially challenging. At Badil, 55% of the mothers of children with type 1 diabetes can’t read, and the same is true of 40% of fathers. It’s the mothers who matter most, however, because they tend to do most of the diabetes management.
The association’s achievements, as reported by Dr. Balafrej, are extraordinary. When Badil began, most patient HbA1cs were dangerously high (14-18%); these children were headed for serious medical complications in their 20s and 30s, followed by premature death. Through regular access to Badil’s supplies, education, and emotional support, however, over 90% have now dropped their A1Cs below 10%, and the clinic average is 8.2%. Badil, in other words, has dramatically extended 900 lives, while curtailing the pain, suffering, and financial burden of diabetes-related complications.
How did Badil do it?
First, it was the voluntarism of the association’s five physicians, along with the parents who worked with them, that mattered most. If it wasn’t for the extraordinary commitment and generosity of these women (and a few men), none of this would have happened.
Second, Badil’s creators came up with some interesting organizational innovations. For example, they created a sliding scale of voluntary fees. Low income parents don’t pay anything for Badil’s medical consultations and HbA1c tests, but higher-income parents are urged – albeit not required – to contribute what they can.
This kind of resource pooling is often hard to pull off, because higher income families may refuse to be treated alongside the poor. Badil’s services must be of sufficiently high quality to attract higher income families who would have otherwise have gone private.
Badil also created its own cooperative for selling insulin, syringes, strips, and other supplies. These are available at substantially reduced cost, made possible by bulk purchases and special deals.
Third, the educational and testing services Badil offers are fantastic. Each incoming family gets five sessions with a doctor, five with a diabetes educator, and five with the dietician. Thereafter, they get another 10 training sessions to build up their self monitoring and management skills. As a result, most patients (or their mothers) can now adjust their own doses, including those who are otherwise illiterate. Badil has taught mothers functional literacy to save their kids’ lives.
Finally, the association has been able to nurture a positive relationship of sorts with the government hospital and another non profit. The former pays the doctors’ salaries (who then donate their overtime to Badil), and supplies some insulin, medical tests, and the like. The friendly non profit agency gives Badil office space and meeting rooms.
There are problems, of course. First, too many patients still do not have regular access to insulin, strips, syringes, and key health tests. Balafrej would love for Life for a Child to support another 65 of the association’s poorest families, and to offer everyone four blood glucose strips a day, rather than the two currently available.
Second, the government hospital’s administration has become frustrated with the arrangement, and Badil’s hitherto positive connection with the state has begun to fray. A full rupture of the relationship could prove disastrous.
Third, no matter how hard Badil tries, it can’t get access to the small syringes most needed for children. Instead, parents across Morocco must struggle with 0.5 ml/50 U type, which are hard to use for very small insulin doses.
Most importantly, however, Badil hasn’t figured out how to resolve the problem that bedevils similar groups worldwide: how to help paediatric patients when they grow up? Life for a Child’s support goes only to children and youth aged 25 and under, and Badil would probably prefer to do the same. After all, more young patients are waiting for help, and the adults should, in theory, be able to look after themselves. But with unemployment, illiteracy, and a struggling health system, the fate of the poorest over-25s is unclear. If they no longer get the HbA1c tests, guidance, and supplies from Badil, where will they obtain similar care? And if they can’t find another mechanism, will their A1Cs start to deteriorate?
If that happens, Badil’s 12 years of life-saving efforts may turn out to have been little more than a temporary stay-of-execution.
Dr. Balafrej has ideas for new resources, but it’s really up to the patients and their families to get organized. In an impromptu meeting I held with a group of type 1 mothers outside Badil’s office, we spoke about the need for them to develop advocacy capacities to transform the public health system into one better able to respond to their needs.
Outsiders can certainly help by donating time and money, but the impetus for change needs to come from within. There seems to be plenty of interest among the mothers I spoke to; they are strong women, regardless of their poverty.
I wish the International Diabetes Federation could help by developing an on-the-ground support function for groups such as Badil, along with their associated families and volunteers. A small team of activists, mobilizers, and advocates could visit Morocco, along with many other countries, to help Badil-type groups develop their own capacity for civic advocacy initiatives. Graduates of the Badil program could provide a nucleus for broader organziational efforts, linking up with peers in Morocco and elsewhere.
The money for this kind of international advocacy effort wouldn’t be huge. A few thousand dollars goes a long way in some contexts, and in any case, the idea shouldn’t be to develop local dependency on foreign money. Instead, what’s needed is help to transfer skills, experiences, and instincts from place to place, inspiring Moroccan parents with the experiences of Mexicans or Indians, and vice versa.
Type 1 diabetes is a global problem, but lasting solutions must be local. Each community of patients wrestles with his or her own national health system, culture, and resources. There is an enormous amount of capacity developed in stellar groups like Badil; together, the international and national type 1 community must find a way to sustain and scale those efforts up.