I learned about Sana through her Diabetes Voice article that was put out on International Women’s Day this year. I was able to get in touch to talk about type 1 diabetes in Pakistan. Sana wants to tackle the ever-growing problems that diabetics face in Pakistan, such as negative social pressures, lack of acceptance, and lack of diabetes awareness and education. Sana noted that education, including camps and self-monitoring, are extremely rare in Pakistan. Social discrimination is high, she said, due to the huge lack of education and awareness about diabetes, and some varieties of insulin and insulin pumps are basically unheard of, even at a high cost. These are issues that Sana herself has confronted, and she hopes to change things for future generations in Pakistan who are faced with the same problems.
What are the general economic conditions in Pakistan?
In Pakistan, the economic divide between social classes is great. 60% of the population lives under $2 per day. Also, the families are large (usually 5-6 children per family), living in underfed and undernourished conditions, relying on farming, hard labor or many a times, begging on streets. However, there is a reasonable percentage of affording class, who are usually willing to give money as charity.
Could you explain a bit about the healthcare system and medical facilities in Pakistan?
According to WHO report 2010, approximately 80% of outpatient visits are dealt by the private sector in Pakistan. Of what is provided by the government sector, the cost of the public vs. private is not too different. In Pakistan the NCDs account for only 10% of the BOD (Burden of Disease) including cancer, cardiovascular diseases, diabetes, etc, while as much as 40% is that of infections like diarrhoea, TB, Hepatitis B/C, etc. [according to Health Care Services and Government Spending in Pakistan, PIDE Working Papers 2007:32]. Thus the NCDs do not attract the attention of the policy makers as much as the above mentioned diseases.
In public sector hospitals, though there are no consultation fees, it has often been highlighted that the quality of medicines and accuracy of lab tests is questionable. Though this is a debatable generalization, there is a general psyche in the society that tends towards private sector. Apart from that, the rush and the long wait in queues often forces the patients to go to private sector HCPs. It is also shown in the WHO report that the cost of health care in public and private sector is not very different.
What would you say is the biggest, or one of the biggest, struggles faced by type 1 diabetics in Pakistan?
One big problem, in Pakistan is the lack of awareness of the facilities that are available to a diabetic person. For type 2 patients, the HCPs would often not recommend insulin for the reason of its higher cost as compared to oral hypoglycaemic agents. For type 1 patients, the only options available through public sector are premixed, regular and NPH. Analogues, again due to the higher cost, are not available for free. Thus availability, affordability, poor prescribing practices and patient adherence all play a huge role in lack of use of insulin for people with diabetes (both type 1 and 2).
There are very few centres specializing in diabetes care. Type 1 care is especially missing. Understanding of difference between type 1 and 2 is hardly there. Since you can buy most medicines over the counter, many people involve in self-medication and harm their own health. Many type 1s lose their life in the very early stage of the problem due to self medication/alternative medicines.
Rural areas are a special problem, where due to lack of health facilities, education and government initiatives, people might never even know what their child died of. Death registration and investigation of reasons is rare, especially of children!
Do you know about any community-based healthcare initiatives or of any specific organizations within Pakistan that are focusing on type 1 diabetes?
Organizations like BIDE (IDF centre of education) and Diabetic Association of Pakistan have taken a step to provide healthcare and free insulin to the needy type 1s. However, Pakistan has a huge and poor population and this step needs to be taken at a large level (preferably government level) to solve the problem in an effective way. Apart from this, a huge media campaign for awareness, especially regarding the signs and symptoms of diabetes, and difference between the two types is necessary before we begin to see light!
Can you discuss other factors, such as social dilemmas you have mentioned, that may be getting in the way of adequate care for type 1 diabetics?
People tend to believe a lot in non-standardized medical treatments, like spiritual, psychological, herbal, etc. Many people who are diagnosed with type1 (like children who are diagnosed) will tend not to come back to the HCP and will try his/her luck at one of these alternative medicines. Once my doctor told me about a 12 years old who was diagnosed with type 1 and was being fed with 40 pieces of 'ladu' (a traditional sweet) by a fake spiritual healer. He went into a ketoacidosis coma and was recovered with huge difficulty.
Use of bitter gourd (kerela) for treatment of diabetes (both types) is common and popular. Since (as far as I have seen), these methods hardly work, a common sentence you'll hear is "diabetes is like termite! It'll eat you up whatever you do". I feel much of this is due to non compliance of the patients themselves. Another common myth is that if you have been prescribed insulin it is indicative of your very bad health state and nearness of death. People, even type 1's frightened of this social stigma, tend to avoid using insulin.
Thanks so much to Sana for answering my questions and giving us some insight into type 1 diabetes in Pakistan.