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20 Years of Thought Leadership

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With more than 20 years of thought leadership in healthcare, Saira’s blog offers insights into health policy legislation and regulation, health advocacy, trends in rare and ultra rare diseases, and more.

Check back for valuable posts.

 
 
Can Alzheimer’s Follow Kidney Care?

President Trump signed an executive order last week to modernize kidney-disease treatment for the first time in decades, a move that could reduce spending and improve treatment for one of the country's most pervasive illnesses. Citing the many millions of Americans suffering chronic kidney disease and kidney failure, the EO required Medicare to test different payment models encouraging a range of options that will improve patients’ lives and maybe even save some money.

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Robbing Peter... to Pay Peter...

In these days of deeply divided government, partisanship and extreme politics, it seems remarkable that both houses and both parties came together just before the long weekend to release a drug pricing proposal…

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Saira Sultan
ICER - True to Form!

ICER is doing what they ALWAYS do.  After putting their “ultra-rare” framework out for comments, they are just going ahead and applying it to Hemophilia A.  Here’s a snippet from their draft scoping document:

“ICER has posted and asked for public comment on proposed changes to its value assessment..."

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Saira Sultan
My Thoughts: Faces of Sickle Cell: Include Us in Clinical Trials

I talk with young adults living with sickle cell disease and with parents caring for their children with sickle cell disease. They are in and out of hospitals, more encounters with the health care system than they can count or care to remember. So how is it that they go for years without anyone approaching them about a clinical trial? This is much more common than one would think. 

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Saira Sultan
DECLARATION of INDEPENDENCE FROM SICKLE CELL DISEASE

I was honored to speak at the Sickle Cell Consortium meeting in Atlanta this month. I spoke at length with several patients and they are rightly demanding change. I sense a more empowered tone to these voices than I have heard over the 5+ years I’ve been fortunate enough to work with this community. I want to add my voice to theirs, to the building chorus demanding change.

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Saira Sultan
Who Gets Hurt When Drug Prices Don’t Go Up

The heavy scrutiny by Congress, payers, and the media on drug price hikes may be having its intended impact – giving manufacturers pause with respect to the frequency and/or magnitude of price increases. There’s another effect that bears keeping in mind, on the wholesalers that have long operated with a margin-dependent business model that factors price increases into revenue projections

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