The Atypical HUS Foundation

 

http://sidharthsethi.blogspot.com/2016/04/eculizumab-for-ahus-first...

This article was written about our son, Jacob. We were living in India at the time of his first episode with aHUS. This article was written to bring awareness to the need for eculizumab in all countries. Jacob was able to receive the needed drug after 4 weeks of jumping through many hoops and diplomatic red tape. It was hard to sit in a hospital with two other parents who had children suffering from the same illness knowing my child could get the treatment all because he was a US citizen.

The article notes that Jacob had genetic testing that came back normal. Recently we had new testing done through Machaeon and just received the results last week. That testing did find a genetic link to aHUS.

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Hi Samantha I met Jacob's grandparents in Iowa back in. 2014 . It is good to know about his recovery because I know how difficult your situation was. But I believe BUPA was of help. Great to see you are championing access for eculizumab in places like India as not all with aHUS can benefit from complement inhibitors . Hope you have completed the aHUS Global Survey as a carer from India your experience would be so helpful.
Samantha your blog ties in with two other discussions right now involving Kamal who is from India and leads patient organisation aHUS India

My parents went to Iowa in 2014 to gather information on our behalf. They spoke highly of all the wonderful people they met and all the information they learned for us. Yes BUPA was our insurance provider while we were in India. It took a month or so for them to approve the Soliris. Then it was a matter of working through the many diplomatic hoops to secure the drug and figure a way to ship it to India. Alexion helped with that portion along with a gentleman in India who helps with these sorts of situations.


 
Len Woodward said:

Hi Samantha I met Jacob's grandparents in Iowa back in. 2014 . It is good to know about his recovery because I know how difficult your situation was. But I believe BUPA was of help. Great to see you are championing access for eculizumab in places like India as not all with aHUS can benefit from complement inhibitors . Hope you have completed the aHUS Global Survey as a carer from India your experience would be so helpful.

When I first joined this board I was put in contact with Kamal. I have not met him personally, but know his story. He works closely with Dr. Sethi with his organization.


 
Len Woodward said:

Samantha your blog ties in with two other discussions right now involving Kamal who is from India and leads patient organisation aHUS India
It was good to meet them too with such a surprising story which I have not forgot. I have said this before but it is a wonderful experience when aHUS folk meet up and everyone should take advantage of a regional meeting provided by the Foundation and keep the momentum going.

Helping people in India would be an opportunity for aHUS people in the west give something back having experience such good fortune maybe encouraging your overseas development state department to reimburse companies like Alexion to give controlled compassionate access to individuals like Kamal, who is approaching two decades of living with dialysis after his first encounter with aHUS . His was triggered by a vaccination prior to attending University in the USA

Kamal has put something back by creating the largest service provider for dialysis facilities for kidney patients whose chronic kidney diseases would otherwise be a death sentence.

The same lack of complement inhibitors exists in place like South Africa too.
You can see Kamal in this video of alliance speakers in London. https://youtu.be/LkbFLrYwx2U

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