aHUS Patient Group Expectations of 2018- India

The alliance has asked all the affiliated aHUS organisations and groups to provide their thoughts on what they expect to happen in their nations in 2018.
The first reply came from aHUS India.
What Indian aHUS patients expect from 2018
Another year passed by for Indian aHUS patients in the knowledge that they continue to be denied treatment for a life-threatening disease despite the treatment being available elsewhere in the world.
There are two ways this can change. Either the currently available drug becomes available here or new drugs are introduced.
It does not look like the manufacturer of the only known approved drug to treat aHUS has any plans of introducing the drug in the Indian market. Well, they have spent a lot of money on research and development to bring this drug to the market. Obviously their investors expect returns for the money put in and the risks taken.
There are a number of new drugs that are in various stages of research and development. Some are even in early clinical trials. India is an ideal market for these drugs. Countries where the approved drug is already available may not have many patients who would be interested in trying a new drug. Why take a chance with something not approved yet when there is an approved alternative available?
However, in India, there is a vast unmet need for a complement inhibitor. Patients here are looking for the last straw they can cling to before giving in. They do not have any other option.
Conducting clinical trials on various aspects of these new drugs in a transparent, ethical manner by following all the regulations is the right thing to do in India today. This would be a huge win for all parties. Pharmaceutical companies would be able to find a large number of willing patients. Doctors and researchers would be able to participate in such trials and finally be able to say to their patients something more than, “Sorry, there is no treatment available here in India.” Patients would be the biggest beneficiaries. They would have access for the first time to drugs that would prevent them from progressing to ESRD necessitating dialysis. Those already on dialysis could benefit by getting a kidney transplant and then avoiding recurrence of aHUS which is the most likely outcome today.
Many people point out that Indian patients are prone to be taken advantage of by greedy pharmaceutical companies. This is something that is probably unfounded in today’s context. By following standards for these trials and adhering to the regulations meant for this purpose, these concerns can be put to rest.
Today, when the patients do not have any other choice, to not embrace these trials would be foolhardy. Would we rather be condemned to a life on dialysis at best and death at worst or take a good shot by being a part of a clinical trial?
Indian patients, would overwhelmingly opt for the latter.
aHUS India

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