PNH

[Kerri Grey]

Hi all,

I know this is a little off the aHUS track but PNH is one of the things Ashley was tested for in the beginning. I was reading our local newspaper this morning and there is a local lady that has PNH and over here in Australia Solaris is approved for use with PNH patients but as yet is not funded by the phamaceutical benefits scheme. PNH sufferers are trying to push that it be put on the pharmaceutical benefits scheme as without the use of this drug they dont have much chance of a future. We dont have the same health system as you guys in th US where we can ask our insurance company's to pay for it, we have to pay for it. It made me think of how lucky our family is that Ash is recieving this wonderful drug and for now it is being paid for by Alexion. It has also scared me to death to think what will happen when Alexion decide they are not going to pay for it any more, just because its been approved for use in a condition doesnt mean that the government will put in on the pharmaceutical benefit scheme. aHUS is such a rare condition that the government will probably not see it as worthwhile to put on the scheme when they could be subsidising something else that can save more lives. As i read this article i just wanted to be able to reach out to this lady it made me so sad. Just thought i would share this story with you all.

Kerri

[Kerri Grey]

I agree Zofia, i just worry that the government doesnt.....

[Zofia]

“aHUS is such a rare condition that the government will probably not see it as worthwhile to put on the scheme when they could be subsidising something else that can save more lives.”.
But for the government, the total cost of treatment for common diseases (cheaper treatment for thousands of people) is bigger, than cost of an expensive treatment for very few people. And I agree with Linda, Soliris is cheaper than the traditional aHUS treatment.

[Linda Burke]

Hi Kerri,
As I've discussed with a PNH patient, Soliris is a blessing to those of us who have tried it yet its high cost (over $14,000 every two weeks for the 600mg recommended dose) is alarming to those lacking health coverage or those who are under-insured. Still, a Soliris regimen is actually cheaper than the traditional aHUS treatment route of frequent plasmapheresis-then dialysis-then dual transplant with lifelong anti-rejection drugs. Of course, no one was "cost out" the quality of life issue.....
Our terrific nephrology team prepared a report to our insurers giving the numbers breakdown, and after looking at the expensive alternative, our insurance company quickly agreed to use the cheaper route, Soliris.

[Cheryl Biermann]

Linda Burke has NUMBERS, government as well as insurance like NUMBERS. If they compare traditional methods of treating aHUS wth Soliris, Soliris is by far the most cost effective. I suggest these numbers be submitted to the authorities and if you can get PNH members to do the same, you will have more leverage. Good luck.