Does BIG PHARMA control the IC movement? The answer is NO. In fact, big pharma abandoned the IC movement almost a decade ago. The last big pharmaceutical company to dedicate money to IC was Ortho Urology, makers of Elmiron. They had walked away even before Elmiron went off of patent. The makers of the other oral medications (Atarax, Elavil, etc.) have never been involved in the IC movement to my knowledge. Similarly, the companies that have owned DMSO (and other older bladder instillations) have NEVER spent a penny in the IC movement in the past twenty years. Medtronic, makers of Interstim, has given some money to the ICA but that’s very few and far between.
In addition to education and support, I have also worked hard to advocate for safe and effective products. If you read the editorial in the Winter 2016 IC Optimist magazine, you’ll see that I’ve spent the last year trying to get the AUA to issue a position statement to stop the use of silver nitrate which is still being used despite NO research showing effectiveness and hundreds of serious adverse events. I’m now asking for more patient stories about this.
I’ve also spent years reviewing adverse event reports about Interstim with the hope that the FDA might actually launch an investigation because hundreds and hundreds of patients experienced severe and, in some cases, life threatening side effects. Twenty fatality reports are currently in the FDA’s Maude database. Similarly, when the fake heparin was discovered, we were the only support group that asked the FDA to issue an alert for patients who used heparin in their bladder instillations. Unfortunately, because it was an “off-label” use of heparin, they and the company refused to do so. We were the ones who sent out a warning about it.
For the past ten years, it has been the supplement companies, like AkPharma, makers of Prelief, Desert Harvest Aloe and Farr Labs, makers of Cysta Q, who have funded the vast majority of IC education and outreach activities. These companies (and executives) each got involved because they were personally touched by bladder or prostate problems in their families and wanted to help and thank god for that. Now we have natural supplements available that can and do help, so much so that the AUA encourages their use in the IC/BPS treatment guidelines.
Will new companies, such as Allergan that now owns LiRIS (aka LiNKA), get involved in the IC movement? Not as yet. The ICN is helping to promote these clinical trials because LiRIS is the first treatment in history that has ever healed the worst form of IC, a Hunner’s Lesion, after just a two week treatment period. That is a remarkable breakthrough.
It’s crystal clear that some patients prefer to use a more “natural” approach and I’m one of them. I use far more self-help strategies to control my IC. Because I have pelvic floor dysfunction, my #1 treatment is pelvic floor muscle work. I have a spasming piriformis muscle that requires daily stretching. I also follow the diet carefully and that helps immensely. When I do feel the need for a more aggressive approach, my go to is CystoProtek, the OTC supplement. This is exactly what the AUA now recommends in Step One of their treatment guidelines and what most of major IC clinics now suggest that patients start with. We’ve come a long way in the IC movement and the use of aggressive, harsh therapies is, thankfully, on the decline.
That said, medications are often necessary, especially when struggling with infections, life threatening illness, severe pain and so forth. For the IC patient, using a rescue instillation (aka Hep-Lido-A) can help break them out of a flare. Using pain medication may be necessary and, for some patients, medical marijuana has helped too!
So, for those critics of big pharma, I ask you to ponder this. Had Baker Norton/Alza/Ortho Urology (all companies who owned the rights to Elmiron) not educated tens of thousands of doctors about the symptoms of IC, patients today would struggle far more to find knowledgable doctors. Had they not educated urology nurses, patients wouldn’t have a strong advocate that they can often call in their doctors office. Had they not sponsored IC training courses at AUA, patients would still be treated with older, often ineffective, therapies. And, if they hadn’t sponsored the ICA and the ICN, patient support groups, as well as national and regional patient meetings, would never have happened (note that we haven’t had money in a decade from them). And, today, a small compounding pharmacy, Imprimis Pharmaceuticals, is the first company in a decade to try to create new IC educational and outreach materials through their Defeat IC program. Thank goodness that they care enough to try to work with this challenging medical condition and often vocal patient community.
We, the patient community, don’t have tens of millions to develop new therapies. Rather than demonize the pharmaceutical industry, what we have to do is encourage those few companies that actually might show an interest. Yes, some of their products aren’t as good as they could be.. and we can and should tell them that. We have to be involved whenever possible. We need to speak out about what we need!
Jill Heidi Osborne
President & Founder