aHUS patients with no access to Soliris at high risk of disease recurrence post- kidney transplant – October 28, 2015

More than 12 years post- her aHUS diagnosis, Debbie Basham, 53, Cairns, is clinging to a glimmer of hope, after a Brisbane-based expert advised she may be eligible for a kidney transplant.

“Since my last update on April 23, 2015, my renal doctor, Dr Mantha has spoken with Dr Isbel from Brisbane, who is aware of my health condition and has advised she is willing to consider me for transplant,” said Debbie.

“I’ve experienced all sorts of pre-transplant tests, blood tests and the like,” said Debbie.

In the coming weeks, Debbie’s doctors will examine her test results to determine whether they deem her a suitable candidate for organ transplant.

“Dr Mantha and Dr Isbel plan to review all of my test results and to discuss my options for transplant to determine whether or not they are willing to transplant me,” Debbie said.

“They will ultimately decide whether I am placed on the organ donation transplant list, or whether they can use my husband as a donor.”

Debbie is yet to have met the Government-imposed criteria for subsidised access to Soliris, and fears that without access to the life-saving medication, a donated organ could fail.

“On the one hand, I’m really excited about the possibility of transplant, but on the flip side, I’m really nervous, because this is my only chance at a transplant, and if I can’t access Soliris pre- and post- transplant, I’m worried about what could transpire,” said Debbie.

“For months, I was tested for ways to secure access to Soliris, but was never deemed eligible.

“One day, Dr Mantha gave me a kidney biopsy, which revealed my aHUS was niggling away and continuing to damage my organs,” Debbie said.

Following the biopsy and Dr Mantha’s discovery that despite progressing slowly, her aHUS remains active, Debbie fears that without continued access to Soliris, aHUS patients such as herself, may experience renal failure or permanent organ damage while awaiting results from a blood test to determine their eligibility for treatment access under the Government’s imposed criteria.

“For someone like me, living with aHUS, we can’t always be forced to wait for results from blood tests in order to access Soliris.

“It might only take 24-to-48 hours to get blood tests back from the doctor, but if the disease is active, damage will have already occurred during that timeframe,” said Debbie.

“aHUS patients who don’t have access to Soliris are at high risk of the disease recurring after transplant.

Debbie is concerned that the Government criteria is too restrictive and does not take into consideration the organ damage and risks associated with coming off Soliris.

“I don’t understand why the Government wants aHUS patients to wait in order to sustain some kind of damage before placing us on treatment,” Debbie questioned.

“To me, it makes common sense that you help treat people before any damage occurs.”

Debbie is urging all aPSGA members to continue fighting for access to Government-subsidised Soliris, by writing letters to their local Federal MP and to the Federal Health Minister, The Hon. Sussan Ley MP, to inform the policy influencers and decision makers about their individual circumstances and the urgency of life-saving treatment required.

“We need to keep sharing our stories with the Government officials in charge of funding Soliris, because they have requested more and more “evidence” that Soliris works. In my opinion, our stories are all the evidence they require,” said Debbie.

Share your aHUS story, by writing to your local MP:

The aPSGA has a template letter to assist you with reaching out to your local Federal Member. Please contact us at info@ahusaustralia.org.au to request a copy of this template letter.

To communicate with your local Federal Member:

  • Research who they are
  • Produce a letter, outlining your personal experience with aPSGA, and the importance of securing access (ongoing or otherwise), to Soliris. Be sure to include the aPSGA website for further information, and email the letter to their office
  • Contact their office a couple of days later to set up a meeting
  • Meet with your local Federal MP to inform them about your situation and the urgency of resolving it and request their assistance in doing so
  • Maintain contact with your local Federal Member, build a strong relationship, and ask them to continue acting as your advocate.

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