53
53
3

Keep Tristin in Remission!!!

$11,546 of $21,000 goal

Raised by 58 people in 15 months
Thank you, Thank you, Thank you!! To everyone who has contributed to help Tristin receive his medication, we are in your dept!

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!
+ Read More
Hello! We would like to apologize for not posting more frequent updates. Making progress with Pharmcare labour intensive ... and also incredibly slow.

As of today (July 13th) we are still in the appeal process with Pharmacare, and still fighting to get Tristin the medicine he needs. We have completed the first level of appeal (there are three levels) with no success. We will be submitting the 2nd level of the appeal to the Operations Director of Health Insurance BC on Monday. At this time, Pharmacare is insisting that Tristin switch to a less expensive drug, even though his doctors do not think it is the best course of action. In fact, there are risks that would be irreversible if the less expensive medicine doesn't work. Pharmacare has said further insurance coverage for his current medication is dependent upon trial with, and failure on the less expensive drug. But Tristin's gastroenterologist has indicated it would not be safe to return him to his original drug if the less expensive drug fails. It's a catch 22 ... and it's extremely upsetting to us that they are toying with Tristin's life in this way.

We are asking everyone today to look at this website:
http://action.crohnsandcolitis.ca/forced-switching.

This site provides a summary of the risks involved in forcing patients to switch within class of medicine (called Biologic drugs). Several provinces have taken a stance against making patients change due to the risks involved. BC's system, Pharmacare, has put policy in place that would allow patients to stay on their original medication if they started it before November 1, 2016 (Tris started his in January 2011). However, because Tristin's dose is so high, they are not going to allow him to remain on it. He is being treated differently than all other patients in BC, simply because his biochemistry requires a higher dose to receive the same medical benefit as other patients on a lower dose. Please consider using the website above to send a message to either your MLA, or ours (Lana Popham) or both! There is a super-easy form to use, under the category "Take Action."

The BC Ombudsperson's Office still has an ongoing investigation into the process Pharmacare is putting us through. They have shared with us that they do have concerns about fairness of this process and we are working with them to see that the problems get fully identified and corrected. We have also reached out to our MLA for assistance with advocacy at the Ministry level. In case you would like to offer your support by letting our MLA know you care about Tristin's situation, you can reach Lana Popham at Lana.Popham.MLA@leg.bc.ca or (250) 479-4154. If sending an email, you can also CC the Minister of Health at HLTH.Minister@gov.bc.ca.

As always, we are so incredibly grateful to everyone who has supported Tristin and our family as we fight this battle to ensure Tristin can continue receiving the medication he requires. To date, Pharmacare has provided coverage each month at the very last minute - however Tristin is due for his next treatment next week, and Pharmacare has indicated there will be no more "one month/last minute approvals." (We haven't given up yet though!!). To everyone who has contributed, THANK YOU SO VERY MUCH. We will update again when the 2nd appeal has been reviewed. (Please feel free to share this update - the more people that contact Lana Popham, the better!!)
+ Read More
First off, again, THANK YOU for your support - in addition to all the contributions, we have gotten so much advice and encouragement! It means the world to us!! We wanted to give an update on how things are progressing with actually getting Tristin the coverage he needs for his medication.

Pharmacare has been amazing at explaining their processes, letting us know what they can and can't do, and giving guidance on different ways to approach getting coverage. They need to hear from a medical expert (a gastroenterologist) that Tristin has no other medical options available. They also need to see medical evidence that the medication is working effectively (they operate under the assumption that a anything above the maximum dose, means that the drug has stopped being effective for that person).

Tristin's WONDERFUL previous GI doctor from BC Children's has stepped up, and agreed to summarize and submit all the required info to Pharmacare. This is way above and beyond anything he is required to do, and, as much as we already loved Dr J, we love him that much more now!!

We are waiting to hear back, hopefully in the next week, whether the information he submitted is enough for Pharmacare ... we will keep you posted!

Again - thank you so much for supporting Tristin. We are so relieved and grateful to know that regardless of the outcome next week, Tristin will get his March dose of medication. A special THANKS!!! to Dean's generous and wonderful new work family, Thrifty Foods, for their ongoing support! There really aren't enough words to explain the difference you have made in our lives!

- the Ozards.
+ Read More
This update is to clarify why Tristin isn't comfortable with the “free medication program” offered by the drug company. I apologize for the length!

Many "big pharma" companies offer "compassionate coverage" programs. It's a lovely name, but not accurate by definition. We have spent hours with the regional manager to get a better understanding of how this program runs. I'm going to call the program BIAD and use PC as short for pharmaceutical company. GI is the abbreviation used for Gastroenterologist (a "stomach doctor").

BIAD requires patients to sign over ALL of their medical records.The consent form specifies the right to "collect information from and share information with" all healthcare providers, including physician(s), pharmacist(s), heath-care providers at Program clinics or any other treatment facilities (i.e., hospitals or walk in clinics), as well as other people who work for the PC. The coordinators can literally go to your doctor's office, read through and make copies of your chart.

It is well documented that people withhold information from their caregivers when they know or believe that information may be shared with others. This is concerning because 1) you can't get the best medical treatment without all of the relevant details; 2) It promotes a non-trusting relationship with your caregiver. Privacy is key. Would you want people who work/live in your community to know your medical history (think pap smears or rectal exams, mental illness diagnosis, counselling, etc.)?

Many of the front-line people who work as coordinators for programs like BIAD are good people. But the fact remains that they work under no ethics/privacy oaths and their first line of loyalty will always be tied to their paycheque - not the individuals receiving "free" medicine.

The PC stores their data outside of Canada, and its privacy is governed by the law (or lack of) of those countries. 2017 was a HUGE year for security breaches. No one wants their credit card numbers made public, but with other things people often say "I'm an open book. If you really want my information, take it!" But consider this: Imagine a security breach of your medical info. If you survived cancer, you may find yourself not able to get medical insurance the next time you change jobs. If you have a mental health diagnosis, you may find yourself not being allowed to cross an international border. If you confided in your doctor you are gay, you suddenly cannot get medical insurance OR cross some international borders! (yes, this information is gathered and tracked. Google "data mining border security" for info on this).

It's helpful to understand what the PC does with this information. 1) it uses the data to manage the patient's medication usage and report concerns to the treating GI doctor, including: providing bloodwork/tests, infusions, dose changes, side effects, drug efficacy and symptom management. 2) they use the data for research and development of current and future medications within the PC. 3) they use the data for marketing purposes - to sell the drug in other countries or to obtain approvals to use the medication for other illnesses.

Tristin's GI says he relies on the BIAD coordinators to alert him if there are concerns with treatment. BIAD coordinators are not doctors, and most are not even educated nurses. They are independent contractors hired by the PC to operate BIAD (by hiring them this way, the PC cannot be held accountable for them as employees). This leaves non-experts making both ethical and medical decisions with the complex and private medical data they now have access to with zero accountability.

Next comes research and development of new and existing drugs. Tristin has often participated in research for his disease. Using personally non-identifiable information to improve treatments is not a concern to him.

Last is marketing. Participation in the BIAD program requires participation in at least some of the PC's marketing programs. While patients CAN fully opt out of participating in research and development, they CANNOT opt out fully from marketing. One way to look at this is that the PC has to SPEND money on R & D. But they MAKE money from their marketing. They have to make enormous profit in order to please their stakeholders. Justifying increases in the cost of medication and finding ways to use their current medication in other ways are just two ways they can do this. For example, if a PC observes that 10% of the people using a drug for Crohn's disease have arthritis, they can track patients to see if there is any justification to using the medication for people with arthritis. All of a sudden the program coordinators are given a protocol to follow, asking all patients leading questions about joint pain. This is done with the purpose of trying to get the Crohn's drug approved to treat arthritis (a whole new market demographic).

A cost increase example: If a PC isn't making sales projections in any given quarter, they can see how many people are using a given drug, and the doses people are taking. Then they can determine what drug(s) to increase the cost of in order to meet their profit obligations to shareholders.

There are other concerns, such as:

- The BIAD program coordinators not only monitor the patient's treatment with the medication but they also recommend dose increases. It makes one wonder if the dose increases are being driven by medical need or pharmaceutical greed.

- PC's get most of their sales dollars through insurance corporations. These corporations can be private (i.e., Pacific Blue Cross) or public (i.e., Health Insurance BC). Sales to insurance companies helps to maintain the inflated cost of many medications. If you think about the fact that the PC's give out free medication to supplement the amounts not covered elsewhere, you may connect the dots to see how inflated the costs actually are, and how much they profit from the sale of their drugs. BIAD means they get to maintain their client-base. In a very real sense, the PC's profit directly from their "compassionate" programs.

- People don’t seem to ask questions about the BIAD consent form. My thoughts: patients are being told to sign the form by their doctor, whom they trust (google "Canadian big pharma pays incentives to doctors" to gain insight), and they just simply need the medication. But the consent form is written in legalize - it cannot be understood without a lawyer (even the BIAD Regional Manager had to refer to the PC's legal department several times to clarify its intent). The hope is that patients are uncomfortable asking questions, they don't want to "make trouble" or they are too desperate to give full attention to the importance of what they are signing.

- These programs are essentially privatizing health care in Canada. When patients are expected - by their province's own health care program - to obtain their medications from the PC directly, there is great cause for concern.

*There are complex ethical and legal factors at play here. All information provided is to the best of my knowledge and understanding at the time of writing, and while I've tried very hard to ensure all information is accurate, please forgive any errors (I will make corrections if/when/as necessary). If you are still interested after reading through ALL of this, I recommend you do some Googling! I am always willing to discuss any of the above, as well!
+ Read More
First off, we'd like to apologize for taking so long to post an update. We are totally overwhelmed with support (which we have received in every way imaginable!) and are so grateful for our family and friends (and to their family and friends also) who have reached out! This is a stressful time, and we are trying to keep some balance and normalcy in our lives as we work continuously with Pharmacare, Tristin's team of doctors and the Ombudsman's office to get coverage for his medication. We are reviewing research studies and literature - anything relevant that may help our case with Pharmacare - pouring through 15 years of Tristin's medical records and trying to stay focussed and positive.

So, here's our first update ... and there is some good news!

After much back and forth and lots of convincing, Pharmacare has agreed, just for this one week, to cover the full cost of the medication Tristin needs for his infusion tomorrow (Feb 13th). They have also committed to a full review of his situation in the next four weeks - before his following infusion comes due. We've been told that the Director of Pharmacare herself will be reaching out to us in the next week or so. This is a HUGE positive step and we are really hoping that this bodes well for the final resolution we are needing. In case Pharmacare doesn't rule in Tristin's favour, we can still appeal through Health Insurance BC and the Ministry of Health, although not within the time frame needed to get his next dose covered.

The person who spoke to us at Pharmacare indicated that while there are valid reasons for Tristin to remain on the medication at the dose recommended by his Gastroenterologists, the dose is literally 4 times the maximum allowed by Pharmacare (most people don't come close to requiring the maximum dose allowed). Tristin metabolizes medication extremely fast, and it is clear from his medical tests and history that he really does need this high dose. This is true not only for this one medication. Unfortunately for him, all of his medications need to be at extremely high doses, or they are not effective.

We feel that we can breathe a bit now, knowing that this week is covered and we do not have to access any of the contributions made to his Go-Fund-Me page. We are really, REALLY hoping to return every dollar that has been generously given in Tristin's support!! We will do another update after the Director of Pharmacare gets in touch and the review/appeal is under way. In the next day or two, we will also post another update, giving more information about the pharmaceutical company program that provides medication to people in need (we've had a few questions about this).

Again, a HUGE thank you to everyone for contributing, reading, sharing and supporting Tristin. There really aren't words to explain how much your support means. OUR DEEPEST THANKS.
+ Read More
Read a Previous Update

$11,546 of $21,000 goal

Raised by 58 people in 15 months
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
$50
Anonymous
2 months ago
RP
$20
Ramona Pfiefer
2 months ago
MR
$5
mike reid
2 months ago
SN
$36
SHIRLEY RITA NELSON
2 months ago
$10
Anonymous
5 months ago
MC
$20
Meagan Crawford
5 months ago
$50
Anonymous
5 months ago
$30
Anonymous
5 months ago
$20
Anonymous
5 months ago
$500
Anonymous
5 months ago
or
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.