OCRFA Advocacy Day on Capitol Hill for FY2019 funding
MIOCA was well represented on Capitol Hill on March 6th by sending two MIOCA board members and eight survivors from Michigan to combine with 65 other advocates from across the country for the 2018 OCRFA Advocacy Day. The Ovarian Cancer Research Fund Alliance organized the event in an effort to bring awareness of ovarian cancer to members of Congress and stress the need for continued funding for ovarian cancer research on the federal level. Our Michigan advocates had the opportunity to participate in meetings held in nine different House and Senate offices. Our voices were heard as we expressed the need for improving care for ovarian cancer patients, for increasing ovarian cancer funding through the congressionally directed medical research program, as well as continuing support of Johanna’s Law which provides for the critical education of the public.
If you could not attend Advocacy Day, you can still help in the effort by contacting Senator Stabenow or Senator Peters or your US Representative and urging them to fund/support the following ovarian cancer programs:
- +2.2 billion increase to NIH budget along with a proportional increase of at least $319 million for NCI
- $8 million Ovarian Cancer Control Initiative (OCCI)
- $5.5 for Johanna’s Law at CDC
- $30 million in funding for the ovarian cancer research program at the Department of Defense (a $10 million increase over 2018.)
- Oral Parity HR1409 – Has been introduced in the House but not in the Senate. Goal is advancing legislation in the House and to help generate interest in the Senate. Need our legislators to support this initiative.
- Encourage your representative to join the Ovarian Cancer Congressional Caucus if he/she has not already done so.
Contact Your Legislators to Request Appropriate Funding for FY2018
MIOCA helped turn Capitol Hill teal on March 1st by sending three board members and two representatives to combine with the 80 representatives from 25 states for OCRFA Advocacy Day 2017. The Ovarian Cancer Research Fund Alliance organized the event in an effort to bring awareness of ovarian cancer to members of Congress and stress the critical need for continued funding for ovarian cancer research on a federal level. Throughout the day, advocates met with a total of nine legislative staffers and House representatives.
If you could not attend Advocacy Day, you can still help in the effort by contacting Senator Stabenow or Senator Peters or your US Representative and urging them to fund the following ovarian cancer programs:
- +$2 billion increase in NIH funding compared with FY2017
- $20 million for the ovarian cancer research program at the Dept of Defense
- $8.0 million for the Ovarian Cancer Control Initiative
- $5.5 million for Johanna’s Law at CDC
- Ensure that the “Cancer Moonshot Initiative” funds ($1.8 billion over 7 years) remains additive and are not used as a supplement to FY2018 NIH appropriations as an offset to cuts to the NIH's budget.
- +$2 billion increase to NIH’s budget compared with FY2017
- $20 million for Ovarian Cancer Research Program at DOD (maintain current funding level)
- Ensure forthcoming health care reform legislation maintain existing patient protections around pre-existing conditions; lifetime and annual coverage caps; and no rescission of coverage.
- Ask that congress address the narrow network issue and ensure broader availability of affordable health plans that cover standard of care treatment for ovarian cancer in forthcoming health care reform proposals.
Cancer Patients One Step Closer to More Affordable Treatment Access Thanks to MI State Senate
Lansing, MI (May 10, 2016) Cancer patients across Michigan today found renewed hope as members of the state Senate approved Senator Goeff Hansen’s bill to lower the cost of certain chemotherapy drugs.
Senate Bill 625 received overwhelming bipartisan support, passing 36-1, and now moves to the state House for consideration. The bill would lower monthly out-of-pocket costs for patients whose physicians believe oral anticancer medications are a better treatment than intravenous (IV) treatments, putting the needs of patients first while strengthening the patient-physician relationship.
Forty other states and the District of Columbia have already enacted similar reforms to make oral anticancer prescriptions more affordable for patients. Patients, health care providers, and family advocates urged the state House to take up SB 625 immediately.
SB 625 is supported by the many members of the Michigan Oral Oncology Parity Coalition including the Michigan Ovarian Cancer Alliance.
ADVOCACY INCREASES SUPPORT OF FY2016 OVARIAN CANCER RESEARCH FUNDING
Recently, eighty survivors and supporters met with legislators in Washington, D.C. to advocate for funding of ovarian cancer research, education, and awareness. The Ovarian Cancer National Alliance announced today that this year there is the largest sign-on letter for the Department of Defense Ovarian Cancer Research Program in OCNA history. Please review both the House and Senate letters to see who signed on to each. If your representative signed on, please send him or her a thank you note! Please also thank both Senator Stabenow and Senator Peters for their support as well.
FUNDING NEEDED FOR FISCAL YEAR 2016 - LET YOUR VOICE BE HEARD!
Teal was visible at the Capitol on March 10, 2015 for Ovarian Cancer National Alliance's annual Advocacy Day. Eighty ovarian cancer survivors, caregivers, researchers and others touched by ovarian cancer met with their members of Congress today
to urge their support for critical research and educational programs. Please join in and add your voice to theirs
Ask Congress to fund the following ovarian cancer programs:
- · $20 million for the Department of Defense Congressionally Directed Medical Research Program - Ovarian Cancer Research Program
- · $7.5 million for the Ovarian Cancer Control Initiative at the Centers for Disease Control and Prevention (CDC)
- · $5.5 million for Johanna's Law at the CDC
- · Robust National Cancer Institute funding, ideally reaching the Professional Judgment budget of $5.75 billion
Strong funding for federal ovarian cancer research and education programs will allow us to build on prior investments in the search for better prevention, early detection, and treatment of ovarian cancer. Click here to send a message to Congress asking them to support ovarian cancer research and education .
It is critical that your members of Congress hear from you! They are currently making decisions about how to spend federal money in 2016. As a constituent who has been touched by ovarian cancer, please take a few minutes today to send a message to your legislators
Taking action takes just a few minutes, and it can make a crucial difference in ovarian cancer research and education.
DOXIL SHORTAGE, AGAIN
The main supplier of Doxil has decided to close their plant and discontinue production of the drug. Johnson & Johnson, the distributor, said it therefore is likely the Doxil shortage will continue through the end of 2014. Due to FDA approval process, it is doubtful that Johnson & Johnson will have a new supplier before the end of 2014. More information for patients and families can be found here.
MI SENATE VOTES TO APPROVE MEDICAID EXPANSION
The Michigan Senate voted to expand Medicaid health care coverage to an estimated 450,000 low-income residents, making it the 25th state in the nation to do so. The bill will not become law until April 1 because it failed to get the two-thirds majority required to give it immediate effect.The House has already passed legislation to expand coverage, which is supported by Governor Rick Snyder.
The Ovarian Cancer National Alliance has been working with other patient advocacy organizations urging state legislatures nationwide to expand Medicaid because it should help thousands of women with ovarian cancer afford necessary treatment, as well as the preventative care that might result in an earlier diagnosis.
FDA PAPER INDICATES DRUG SHORTAGES ARE DUE TO LOW PRICES, NOT LOW REIMBURSEMENTS
A new paper authored by two Food and Drug Administration (FDA) employees argues that the recent spate of drug shortages was caused by numerous factors, all of which can be tied to low prices for the drugs. The lack of adherence to quality standards and low rates of redundancies are directly tied to manufacturer resources. The paper proposes that quality be included in information about the drugs. Much of the recent discussion around drug shortages is related to reimbursement, which is the amount Medicare pays the provider for the drug, rather than price.
APPEALS COURT RULES BRCA1 AND 2 GENETIC MUTATIONS CAN BE PATENTED
On August 16, 2012, the United States Court of Appeals for the Federal Circuit upheld a patent claim on the BRCA1 and BRCA2 mutations. Numerous patient and provider groups—including the Ovarian Cancer National Alliance—supported the case, which was led by the American Civil Liberties Union (ACLU). Myriad Genetics owns the patent to the BRCA1 and BRCA2 genetic mutations, and sells a test for those mutations called BRCAnalysis that costs approximately $3,300.