Share your aHUS story

Tell the world your story! The Atypical HUS India Foundation invites patients and their family to record short videos about their story - how did you know you had aHUS? What did you do soon after? What is your current status? What frustrates you about our situation? Share your videos with us by tagging us on social media or sending us an email.

The importance of a database of aHUS patients in India

If you ask someone what is the number of aHUS patients in India, the only answer you will get are 'guesstimates'. No data exists on the number of aHUS patients in India. Given estimates of the global prevalence of this disease of 2-3 per million people, one can assume that there could be between 2000-3000 patients. That is a huge number.

The trouble with this disease is that is so rare that most doctors rarely see aHUS patients. And surprisingly, while research shows more adults are diagnosed than children, most doctors think of this as a pediatric disease. In India, probably, there are more children diagnosed with aHUS than adults simply because of more awareness of this disease among pediatricians and pediatric nephrologists.

The aHUS India Foundation is now launching a registration for aHUS patients in India. All you need to do is to fill this form and you will be added to the aHUS database. The database is completely confidential and the data in it will not be shared with anyone - including doctors, researchers, pharmaceutical companies, the government etc. No one will have access to your information. No one can identify you after you've filled in this form.

Without your help, however, we will not be able to build this database. Without this database, we cannot lobby with the government to improve access to treatment for aHUS patients. Without this database, we cannot have discussions with pharmaceutical companies on the number of aHUS patients in India which is important for them to bring their drugs to India.

So, please take a minute to fill out the form. It takes less than 2 minutes and many of the questions are optional. Also share this with any other patients you might know. Share this with your doctor and request them to ask their aHUS patients to fill it out.

Here's the link to share with anyone:

https://forms.gle/yBMqTanwwW4e34GD6

Thanks so much for your support!

Soliris gets approval for sale in India

Soliris (brand name for the drug Eculizumab from Alexion Pharmaceuticals, now acquired by Astra Zeneca) was finally approved by the Indian drug control body, Central Drugs Standard Control Organization (CDSCO) yesterday.

The drug was advised for approval by the Experts Committee in May last year. The approval finally came yesterday. This is very welcome news for patients afflicted by life-changing diseases such as Atypical Hemolytic Uremic Syndrome (aHUS).

This clears the way for Astra Zeneca to start marketing and selling the drug in the country.

What remains to be seen though - and this is critical for a country like India - is what the drug will be priced at by the company. This is what will dictate if anything at all changes for aHUS patients. If the drug is priced even close to what it is priced at in developed countries, this approval does not mean anything at all. At least for most aHUS patients.

A lot of the discussion around this drug often centres around patients who need it short term. While there are patients who need it short term - some cancer patients, patients with certain conditions and even some aHUS patients with a certain set of mutations - the vast majority of aHUS patients are affected by mutations like those in the Complement Factor H (CFH). These patients would need the drug long term, potentially life long.

The Indian Government's Rare Disease Program provides a grant of Rupees Fifty Lakh (5 million) to rare disease patients which, at the current rates in developed countries, will barely fund the drug for a few months. What happens after that?

So, while aHUS patients in India do have a reason to cheer news of this approval, we cannot start celebrating yet. News on pricing of this drug is the next most critical aspect that we now await.