In the recent times I have been hearing so many new names of different diseases and majorly they are all auto-immunes. Last month my sister was down with infection called Sepsis, I had never heard of it. When one gets infected it spreads rapidly in the body reaching out to every organ. It went so bad that one point of time the Doctor told us there may be no hope of survival, because all her organs were rapidly going down. It was very shocking and scary for all of us, because 2 to 3 days prior she was in good health and then suddenly we could not even imagine, it could go so bad in just a day's time. Anyways with god's grace she recovered.

Then lately I heard of this disease called Spinal Muscular Atrophy, known as SMA, it's a genetic condition, where there is a loss of motor neurons in the spinal cord and this impacts the muscle function. Myasthenia is also somewhat similar, because in this condition also there is an impact on the muscle function. For my hubby when he was diagnosed with Myasthenia, his upper body muscle strength was loss. He could not eat, comfortably breathe or even sleep well. Everything was on supports and it was so painful to watch him like that. While Myasthenia is mostly occurring in adults, this SMA is occurring in children mostly infants. It must be so difficult for them to go through it, and the worst part of this disease is that the treatment is way out of league for many people.

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The treatment for SMA is a gene therapy which is called Zolgensma and that costs 16 crores, which is almost 1900K USD. I cannot even imagine having that kind of money to think of the treatment. What would people do if healthcare is so much out of reach for common people. For this kind of money you need to be super wealthy. There are some other treatments but they are all temporary.

Sometimes I feel that getting good healthcare services is also a privilege for the rich only. One hospital visit can completely empty your pockets. For my hubby our total medical cost for his Myasthenia treatment was 30 Lakhs INR, which is 35K USD. It is a lot of money, thankfully we have our medical insurance of good value. But, in the beginning they refused to pay us, saying this condition is not covered in the policy, though there was nothing specific mentioned about it. We had to take legal help and fight and then finally they paid us after 6 months. In the mean time we had to pay the bills from our pocket, which we somehow managed with some loans.

In the first place when you have such a condition in the family, you are already so stressed and then you have to deal with the financial stress. It's like crucifying the person.

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