support from government agency for treatment of alk positive lung cancer patient in India

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Dear All, 

I am writing this regarding  your support to make changes in government policies for alk positive type of lung cancer which is very rare and worldwide only 3-4% patient are Getting identified  out of thousands of lung cancer patient. 

So what is alk positive?  

An ALK rearrangement is an abnormality in a gene that can occur in cancer cells such as lung cancer cells.

In simple word genetic mutation which is very rarely occur. 

My mother is alk positive patient .She never smoked and was having very active lifestyle but still she got Dignosed with alk positive lung cancer.  Sadly there are many cases of this dieses are from active lifestyle like sports,  wrestling and professional who never smoked and got Dignosed. 

Cutting short to why and what i need is as below :

1)medicine cost : medicine cost for alk patient is so high that many patients get shocked of their life . Primery drug crizotinib costs around 80thousand per month which is highly impossible for middle class or even upper middle class patient. 

Next level drug are costing from 1lakh per month to 4.5lakh per month.  Imagine your spending 30-40laks per year just to survive ?

This patient are going through financially as well as physically.

In USA or Australia this patient are got covered under insurance policy or getting financial support from government  due to strict government health policy .

In India most of insurance agency rejects claim by saying this are targeted drugs and not chemotherapy and we finance chemotherapy only . They don't understand this type of patient can only survie longer duration on this targetted drugs but not on chemotherapy . Overall survival is 6-7 years for cancer patient on targetted drugs who is stage 4. there is only 5% chance for survival of 5years for stage 4 patient on chemotherapy .

 

Imagine your given 2 options for your loving one chemotherapy or targetted drugs which are latest available medicine and you can't purchase it. 

This is happening with Indian patients. 

So we request government to look into to reduce the cost of medicine ,financial support ,adding this patient in ayushman bharat scheme,  strict instructions to insurance agency to cover this medicine. 

2)clinical trials for this patient :

There is hardly any or we can say that no any clinical trials are happening in India due to stringent clinical trial policy in India.  Most of giant pharma company who produce such drugs are pfizer, roche, Novartis gets shy away from India due to difficulties in doing clinical trials in India. 

If you compare it to USA, AUSTRALIA there are more than 20trials are happening there.  Many patients are enrolling and saving their life or we can say surviving.  Best part of clinical trials is all medicine and medical sponcership is done by drug manufacturer .

That is why we request indian government to give easy access to pharma companies Atlest for alk type cancer trials or make it inline with US FDA approval process so that at same time trial can happen in India. 

Its been 2 years we are doing patient advocacy work in India for this type cancer. We are very open with government for all discussions across the table.  Recently my good friend who started work of patient advocacy work on this cancer got award in Canada for his contribution and i believe he is only Indian to receive it till today . We are not doctors but for empowerment of patient we are doing it of course our loved one are fighting with this dieses which is also prime reason...!!!  

I have Listed down the best we can do . I need now support from you, government to make this changes in our policies to safeguard our future and future of our next generation from this deadly disease know as cancer. 



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