WE ARE IN URGENT NEED OF A MEDICAL EXPERT - a gastroenterologist or researcher - who can provide written medical testimony in regards to forcing a medically complicated, long-term user of a Biologic Drug over to a Bio-Similar Drug. If this is you, or you know someone in a position to help us, please, please reach out. We need your expertise!!
We are SO grateful to everyone for all their support - please continue to share Tristin's story, as more awareness and understanding of issues with Pharmacare has the potential to make a huge difference in the lives of many!
Tristin is an amazing 20 year old who has been though a lot! As a brand-new college student smack in the middle of his first term, he has enough stress. His health, however, has once again taken 1st place in terms of things to worry about.
After 9 years of approvals, Pharmacare suddenly denied all coverage for the medication Tristin requires for his Crohn’s Disease (called Infliximab). Our understanding is that his dose now surpasses the amount allowable for coverage by Pharmacare (although his dose hasn't gone up or down in over 6 years). The cost is around $7,800 per treatment.
There has been a lot of media coverage lately about Pharmacare not approving specialized drugs for individual cases. Tristin's case is a little different ... he is already dependent on the drug - it is not a new or unproven treatment option for him. He has been on it, and it has been working, for over 8 years. His medication is a “last-line-of-defense” biologic drug and it is important to understand that if he stops the medication, he cannot go back on it - his system would start to make antibodies within one week of missing his treatment, and this means the medication could never work in his body again. This is well documented in the research for this drug. This medication is not experimental or controversial - it is widely used and many people receive PharmaCare funding for it.
Three independent gastroenterologists have given the opinion that Tristin’s life could be at risk without this medication. He would almost definitely become extremely sick again. We have been given a range of 2 to 5 weeks after missing his first treatment that he would likely require hospitalization. Due to his specific Crohn’s, we’ve been told he is not a candidate for surgery.
He is due for his next dose in March. While there is always the hope(!) that the doctors will be wrong, we are scared and have reason to be very concerned. Time is critical.
We are appealing with Pharmacare and Health Insurance BC, and have an open file with the BC Ombudperson, who are reviewing our process with Pharmacare/HIBC. But this is a long process and while we’d hoped everything would be resolved by now (we’ve been at this for months!), Tristin is out of time. We are hoping to raise $7,000 for his medication, and potentially another $14,000 for future treatments. Our goal is to have 3 months of funding for this drug so that we have time to resolve the issue one way or another with Pharmacare. Our promise is to return all funds that aren't used for Tristin's medication, or if donors prefer, to donate unused funds to the BC Children's Hospital Gastroenterology Unit.
This situation is very, very complicated - there are a lot of ins and outs to Pharmacare and coverage for this specific medication, not to mention that Tristin’s own medical situation is highly complicated and unusual. In addition, there are issues to do with the pharmaceutical company that manufactures the drug. Full Disclosure: The drug company has what they call a "compassionate coverage" program for this medication. For personal and ethical reasons, Tristin feels uncomfortable pursuing this at this time. The concerns are legal and privacy related in terms of marketing for the drug - it is extremely complicated and difficult to write about coherently, but please reach out if you want more information. We are happy to discuss and explain more!!
Below is a video that explains a little about Tristin's history with illness (he was incorrectly diagnosed with Colitis before the escalation was made to Crohn's in 2009) , and his amazing little friend who helped raise money for research many years ago!
Thank you for reading this - we know that by putting this out there, we have just put our burden on others, and we are so sorry. We are so lucky and grateful to have people who care. We give our deepest gratitude to all those who we have leaned on for support over the years - from providing last-minute childcare so we could be at the hospital with Tris, bringing food to the hospital for us, stopping by to take our dog out or letting us talk and cry on your shoulders ... we are eternally grateful for your support.
Here is a link to contact your local MLA (wherever you are in Canada) regarding forcing Crohn's & Colitis patients to switch their medication against their will or best medical advice, purely for financial reasons: action.crohnsandcolitis.ca/forced-switching. It's a super-easy and super-quick process - only a minute or two to send this important message!
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