Global Healthy Living Foundation 50-State Network advocate Lisa Tent delivers Osteoporosis patient perspective to ICER, the Institute for Clinical and Economic Review.
Read Lisa’s testimony below.
California Technology Assessment Forum
Anabolic Therapies for Osteoporosis in Postmenopausal Women: Effectiveness and Value
Global Healthy Living Foundation/CreakyBones
June 30, 2017
I have no disclosures to make regarding my travel here today. The Global Healthy Living Foundation accepts grants and charitable contributions from pharmaceutical companies, government, private foundations and individuals. It has received scientific briefings from pharmaceutical companies, as well as from its independent medical advisory board. I paid for my own travel here today.
My name is Lisa Tent. I’m a patient advocate and member of the Global Healthy Living Foundation’s bone health community; CreakyBones. I want to thank you for allowing me to provide my experience living with Osteoporosis as well as the comments of the over 100,000 patients and caregivers that GHLF serves in the United States.
As we have stated in previous draft report public comments, GHLF remains very concerned about the approach ICER takes when evaluating “value”. Our organization represents patients suffering from chronic diseases, including arthritis and osteoporosis, and we find the lack of the patient perspective and the use of the antiquated QALY measurement incredibly troubling. We believe value means something different to every patient and that treatment decisions should be personal and made between patients and their doctors. We are also concerned by the lack of inclusion of a bone expert among the two clinical reviewers and as a result question the accuracy and validity of this report as well as a perceived, and perhaps, actual, conflict of interest created by the source of funding for this report.
We have found that the overwhelming majority of ICER’s reports favor the cheapest cost drug, do not take a long-term cost or outcomes based views.
Personally, I am most concerned about what kind of fractures ICER is valuing in this review. It appears that hip fractures have been chosen as the weighted favorite. However, according to the Cleveland Clinic, vertebral fractures are more common. , How can you claim to be assessing value of osteoporosis therapies if you are have made the glaring mistake of neglecting vertebral fractures?
This negligence is particularly worrisome to me because of my own journey with Osteoporosis. I have suffered for years from spinal fractures and desperately await innovative therapies to address my condition. Ten years ago, I was a fit and active member of my community. I had a rewarding career running the City Enforcement Program in Malibu which I loved. I actively rode horses, went hiking, and gardened in my free time. In 2013, I began developing spontaneous fractures in my spine, which ultimately forced me into early retirement. Living on disability with five spinal fractures made it almost impossible for me to be mobile, and due to fractures in my thoracic spine, difficult to even breathe. Treatment on Prolia and Forteo helped with my pain and made it possible for my fractures to heal faster, but even they weren’t able to prevent me from sustaining additional spontenous spinal fractures as time went on.
My life has completely changed because of my osteoporosis. It has been immensely difficult for me, but I do not want to give up. I want to do what I can to help others like me to have access to the treatment they need to help heal and hopefully prevent debilitating and life altering fractures. To see your organization claim to measure the value of treatment options without considering what is of value to the quality of life for patients like me – the ability to work, travel, pursue hobbies independently and just breathe without pain – is negligent and mean policy.
Every day, patients look to our organization for help because they do not have access to their medications. Our fear is that insurance companies will cite ICER, and your flawed methodology, when making coverage decisions, further limiting the already poor access to new, innovative, and life changing therapies. While we recognize that actions need to be taken to address the high cost of medications and are appreciative of ICER’s transparency of their funding sources, we believe your ties to the insurance industry impedes your ability to create a balanced assessments of value.