This past spring, one of our Grand Prize winners of the 2011 DiabetesMine Design Challenge was 26-year-old Luciana Urruty, from Montevideo, the capital of Uruguay. As a former fashion designer and a type 1 diabetic for 12 years, Luciana entered the competition with a concept called BLOB, a small, colorful device that discreetly delivers insulin. This is especially important for Luciana, because in Uruguay, insulin injections are essentially the only way for people with diabetes to get insulin. There’s no support of insulin pumps from insurance companies in Uruguay!
We were delighted that Luciana made the trip out to California to take part in our DiabetesMine Innovation Summit at Stanford in September. So great to meet her in person! Today, we’ve invited her to share a bit about her life with diabetes in our first South American edition of our ongoing guest post series covering diabetes across the globe.
A Guest Post by Luciana Urruty
I was diagnosed with diabetes 12 years ago when I was 15 years old. It was just after returning from holiday. When I came back home, my parents took me to the doctor and the doctors discovered very soon after that I had diabetes. Many of the young people with diabetes I know have bad stories about doctors not being able to discover what disease they had when they were diagnosed. But I know many kids with type 1 diabetes now, and I’ve heard that the awareness of doctors about diabetes has improved.
In Uruguay, the total population is 3.5 million, and around 8.2% of the population has diabetes. Of that, 10% have type 1 diabetes, which is about 30,000 people. The doctors estimate that there is another 8% of the population that doesn’t know they have diabetes or that ‘s in danger of getting type 2 diabetes soon. In type 1 diabetes awareness, I think our society is progressing well, thanks in part to the Uruguay Diabetes Federation, an organization founded by parents of children with type 1 diabetes, which is doing many things to inform and raise awareness about the disease. People usually know the basic difference between diabetes 1 and 2, or at least the difference with respect to insulin, especially because many people have older relatives with type 2 diabetes and know that they don’t use insulin.
The perception of diabetes by the generic public, from what I could see in the USA, is the same as you have there. It varies a lot from person to person, but basically the perception in the general public I think is very similar: little real knowledge of the details of treatment, considerable confusion about what we can or cannot eat (often confused with whether or not you can eat salt and flour, etc.), usually associating diabetes with the injections, and often little understanding of how is it that sometimes we need to eat sugar.
There are two major associations devoted to diabetes that perform group education, such as educational workshops, cooking workshops, psychologists, camps and educational tours for children, etc.
The Uruguay Diabetes Federation is mostly dedicated to type 1 diabetes, to educate and integrate children and families, support one another, and so on. They make workshops, camps, lectures, etc. They put a lot of emphasis on communication and support between families. It’s really useful for families dealing with type 1 diabetes. The Diabetic Association of Uruguay has family support and activities with kids, plus they have psychologists, podiatrists, nutritionists, etc. who give educational talks.
For type 1 children, it is very important to have these activities, because they deepen that part of diabetes education that is not complete because of the lack of professional diabetes educators.
The health system is pretty good in Uruguay. Everyone has coverage. Workers can choose whether they want to enroll with private insurance through their work, or if they want to enroll with the free government option. People who don’t work use the government option, or they can pay out of pocket for a private one. All children of workers are covered either way.
Most insurances require patients to meet separately with each specialist: an endocrinologist, a nutritionist, and a psychologist. Diabetes educators are not very common. It’s more common to use the psychologist in the multidisciplinary team as an educator. But it is mostly uncommon to have private visits with a diabetes educator, because there are not many in Uruguay.
With respect to medical visits, depending on how good you are doing, the doctor asks to see you every month or less often. Normally and mostly in children, if you make changes in insulin dosing or if you are poorly controlled, they may tell you to come in every two weeks. Many times the diabetologist gives you his or her phone number or e-mail so that you can ask any questions at any time. The aim of A1c for most diabetologists is below 7, but mostly in young people that is not an easily reachable number. In the last years there has been a big growth of the carbohydrate counting diet, which wasn’t common at all when I was a kid. Now there are many doctors recommending that diet and many nutritionists teaching it.
All the supplies are bought directly from the insurance pharmacy. Each insurance has its own pharmacy with specific supplies: only one type of meter and two types of insulin (one brand of slow-acting and one brand of fast-acting). The glucose meter is given for free to the patient, and then you pay for the strips about 5 times cheaper than at a retail pharmacy.
A couple of years ago, a law was passed about coverage, and after that NPH insulin and Regular insulin are very cheap at the insurance’s pharmacy (one dollar per box of 5 pen cartridges), so many people use these two insulins. Many people have gone to insulin ultra fast and ultra slow. The ultra fast insulin is bought in the insurance’s pharmacy, and the price depends on your coverage, for example mine costs $8 per pack of 5 cartridges.
Lantus insulin is not covered by insurances. However, there is a state agency that will pay for expensive drugs that are important to patients, but are not paid by the insurances. The patient requests funding through some paperwork and once you have it approved, they give you three months’ of treatment. Every three months you have to submit a tracking form and they give you the insulin again. This insulin is almost free! The problem with this system is that sometimes they don’t approve the insulin for some patients, even if its obvious that every patient should have that insulin! In such cases, patients either buy it themselves or opt for the cheaper NPH.
There are also some associations where you can buy supplies, with a small discount from pharmacies. Very few people use meters and insulin that insurances do not cover, though, because it is much more expensive.
The biggest drawback I find in the system, at least in my insurance, is that we must go to the doctor often to ask him for prescriptions. For example, in the case of strips, each prescription is only 25 strips, and when you go to the doctor he can only give you three or four prescriptions at a time. If you measure 5 times a day, you have to go back to the doctor for prescriptions each 15 to 20 days!
Very few people (I know only one person) use an insulin pump, because no insurance system covers them and the patient has to pay all costs out of pocket. Hardly anyone uses continuous glucose meters for the same reason. Each patient uses the meter that is given by his or her insurance, but they are always intermediate range (eg Accu-chek Active in my case). The newest meters are not in our market yet. Either way, if you buy a meter that your insurance doesn’t have, then you have to continue buying the strips out of the system, too.
One thing I would like to share about living with diabetes in Uruguay is how positive it has been to have the Uruguay Diabetes Federation. I think in the next few years there will be many accomplishments in Uruguay that arise from this initiative, since it is formed by people who really care about the quality of life for patients and work hard to make improvements. Uruguay has the benefit of being a small country, which makes the health system more understandable and it is easier to access the authorities and ask for changes.
One thing I would like to see changed the most is the restricted access to new technologies and the fact that we have no choice to choose our devices. I would like the patient to choose which meter and pens to use. Other really important change would be to have the continuous glucose meters and the pumps covered by the insurances. I would like there to be more freedom for the patient!
Gracias, Luciana! Great to hear that basic meds are easy to come by, but we definitely agree that all people with diabetes should have access to the latest and greatest diabetes tools available.