What’s New and Noteworthy in Bone Health
Medicine in the Pipeline: Judy Black, Chairman of the Board, Dr. Andrea Singer, Chief Medical Officer, and I provided testimony at the recent FDA meeting for Amgen’s new medicine, Romosozumab. The committee voted 17/1 to support approval of the drug which will be a “game changer” for osteoporosis treatment. While it is likely to come to market with a black box warning for cardiovascular health, doctors believe that not prescribing this medicine within one year of a cardiovascular event will manage out issues and that the benefits outweigh the risks. Now, FDA will make the final ruling—which could be as long as 180 days. Dr. Felicia Cosman has written several seminal papers on the importance of this drug and was also there that day.
New Podcast from NOF: We’re delighted to let you know that the newest form of communication is our podcast. You’ll see the Bone Talk icon on the NOF website and can click on it or you can access the podcast via iTunes and additional platforms soon just as you do other podcasts you listen to regularly. The first in a series of 35 (to celebrate our 35thanniversary) features Dr. Ethel Siris, an expert in bone health at Columbia University in New York, and a leader and counselor on our NOF board. Tune in to learn more from Dr. Siris. Coming soon: Dr. Susan Greenspan on Treating the Oldest of the Old; Dr. Andrea Singer on Sexual Health and Osteoporosis, Barbara Hannah-Grufferman on Facing a Diagnosis and Embracing Your Best Bone Health.
NOF’s Policy Institute: If you’ve been paying attention to the news, you know that there are lots of proposals out there to change Medicare. While the hype of the messaging is about saving seniors money (and we agree that would be a good thing), when you start to dig into the proposals, you learn that in some of the proposals that there are major limitations to the types and kinds of medicines available to patients. In bone health, we don’t have that many medicines and in some of the proposals, some of the newer medicines would be eliminated from the formulary all together or access would be greatly restricted (meaning expensive). In other proposals, all patients would have to start with the lowest common denominator, a bisphosphonate, fail that, and then go on to the medicine that their physician would have wanted to prescribe first. Fail first is not an option when bones are at risk of breaking.
NOF has launched a new Policy Institute to ensure that the policy initiatives that impact bone health from access to reimbursement are covered and will work with the needs of our patient community and give our physicians the full spectrum of medicines needed to treat our population. We did some work on this a couple of years ago and will continue to lead efforts for our community to make a difference.
For those of you who consider yourselves policy wonks,
we share our recent comment letters to CMS Here:
We also ask that you go to our website and register to send letters to your members of Congress to ensure that the policies that protect your access are maintained. Go to the “Advocacy” tab to sign up to help!
NOF in Communities: NOF was honored to be welcomed to Houston, TX by Berdon (NOF Board Member) and his wife, Rolanette, Lawrence in late January. They gathered friends at the River Oaks Country Club to learn more about bone health and the group leaned in as Drs. Bob Gagel and Laila Tabatabai shared the latest insights on bone health and bone medicines. Getting into communities, sharing ideas and interests, is a critical way for us to embrace bone health, grow our Ambassador program, and raise money for programs and research. We are so thankful for the leadership and philanthropic spirit of the Lawrence family!
ISO 2019: We are lining up a wonderful program for our Interdisciplinary Symposium on Osteoporosis to be held in LaJolla, CA May 15th– May 17th. The outline is now posted on our website—take a peak and get registered! In addition to the amazing in-depth courses during the week, we are doing a pre-conference work shop on Bone Fit to educate physical trainers on the importance of learning how to work with people who have osteoporosis and may have had a break but who need/want to exercise. Exercise is a part of living your best life but after a diagnosis with osteoporosis some movements may need to be modified for safety.
As your Chief Advocate, this cause has taken on a much more personal mission to me over the last few months. My Dad had a series of falls and had cracks in 3 ribs and several microfractures in his spine. He has some dementia and was able to tell us he hurt but wasn’t as specific as we needed him to be about where. It took advocacy (that is the nice term for being a pushy daughter) just to get the tests he needed and more advocacy to get him on medicine for osteoporosis—a medicine that wasn’t “fail first” and would cause gastric distress. I’m so thankful for the support of our NOF Scientific Advisors and a community of “boneheads” to get answers and the care Dad needed. This is a picture of Mom and Dad at Dad’s 90th birthday party last year at this time—so much has changed because of those falls!
Yours in purpose and progress,
Elizabeth Thompson
Chief Executive Officer and Chief Advocate