Advocacy

NBCA’s Role in Patient Advocacy

“WE KNOW THE PATIENT BECAUSE WE ARE THE PATIENT”
 
The National Blood Clot Alliance (NBCA) is a patient-led, voluntary health advocacy organization. Our programs strive to support, educate and advocate for the millions of people affected by blood clots or at increased risk for blood clots. Some of NBCA’s advocacy objectives include:
  • Promote supportive public and private sector policy.
  • Assist in establishing guidelines for the prevention, treatment, and management of blood clots.
  • Promote funding for and establishment of comprehensive thrombophilia programs to allow every patient access to thrombosis specialists within a reasonable distance where patients live.
  • Assist scientists with research efforts relating to all aspects of thrombosis and thrombophilia.
  • Create a national policy agenda and a grassroots advocacy network.

Take Action to Help Stop the Clot®

Did you know there is little federal funding for blood clot education and awareness efforts in the United States? Think your voice does not matter? Think otherwise! Help the National Blood Clot Alliance advocate for additional funding from U.S. Congress for an expansion of educational and awareness programs to reach more people with life-saving information about blood clots. Share your story with your local representatives and let your voice be heard. Your voice matters. Your story matters. Together we can Stop the Clot®.  Get started now.


2024 Advocacy Updates


NBCA Advocates for Blood Clot Awareness on Capitol Hill

Patients, caregivers, advocates, and health care providers met with approximately 50 congressional offices in Washington, DC on March 6, 2024 to share their personal blood clot stories and educate lawmakers about this public health crisis. We’re thankful for our community’s support and the positive response from the congressional representatives and staffers. Thank you to all who stand behind the mission and vision of Stop the Clot.


NBCA Volunteer President Leslie Lake Writes Op-Ed on the Need for Blood Clot Awareness

“We urgently need programs and policies to educate the public on the dangers of clots, incentivize doctors to look for them, and make sure effective treatment is available,” she wrote in her piece, which was published Feb. 12, 2024 by RealClear Health.

Read more.


NBCA Urging Congress to Fund Blood Clot Awareness and Education

There is little federal funding for blood clot education and awareness efforts in the United States, and the National Blood Clot Alliance is on a mission to change that.

We are urging Congress to unlock funding for an expansion of educational and awareness programs to reach more people with life saving information about blood clots.

It takes a village to raise awareness. Blood clot rates are on the rise in the United States and more work needs to be done at a congressional level to combat this public health crisis.

Getting involved is easy. Type in your address and zip code to share your story with your local representatives and let your voice be heard!

Take Action Now


2023 Advocacy Updates


NBCA Advocating for Blood Clot Patients at the National Foundation for Women Legislators Conference

For the first time, NBCA is presenting at the National Foundation for Women Legislators’ annual conference, an opportunity for women lawmakers from across the country to collaborate and exchange legislative ideas. This is a chance for NBCA to develop new partnerships with state legislators who can help champion life-saving policies like SB612 in Florida, also known as the Emily Adkins Prevention Act

Volunteer President Leslie Lake and NBCA COO Teresa Bordeaux will be educating legislators on this public health crisis and building support for legislation similar to SB612 in other states.

The NFWL conference is being held in Orlando, Florida from November 16-18, 2023.


NBCA Joins Other National Public Health Organizations in Urging Congress to Support the Preventing Maternal Deaths Reauthorization Act

The maternal mortality crisis continues to worsen in the United States. Over the last 20 years, pulmonary embolism has accounted for 9 to 11 percent of pregnancy-related deaths in the US, the vast majority of which are preventable.

This is why in July 2023 NBCA joined other national public health organizations in urging Congress to support the Preventing Maternal Deaths Reauthorization Act of 2023. This legislation would continue the federal funding of state-based maternal mortality review committees, which review pregnancy-related deaths to identify causes and make recommendations for preventing future deaths.


The Florida Senate Unanimously Approves the Emily Adkins Prevention Act at NBCA’s Urging

This measure, approved on April 20, 2023,  establishes a work group tasked with identifying the aggregate number of people in Florida who experience blood clots and pulmonary emboli (PE) annually; how blood clots and PEs impact the lives of Floridians; the standard of care for blood clot surveillance and detection; and treatments, therapies and research relating to blood clots.

The work group would also create a risk surveillance system to help hospitals, nursing homes, assisted living facilities, residential treatment providers, ambulatory surgical centers and health care providers identify patients who may be at a higher risk of forming blood clots and PEs. In addition, the group would develop policy recommendations for improving patient awareness of their risk for developing blood clots.


NBCA Meets With Lawmakers on Capitol Hill to Push For Blood Clot Awareness Funding

Patients, caregivers, patient advocates, and health care providers from across the U.S. gathered on Capitol Hill on March 28, 2023 urging Congress to prioritize life-saving blood clot awareness and education funding. Read more.


NBCA Advocates for $5 Million in Federal Blood Clot Awareness and Education Funding

For the first time, the National Blood Clot Alliance (NBCA) was selected to appear before the U.S. House of Representatives Labor-HHS Appropriations Subcommittee to testify about the critical need for blood clot awareness and education funding.  

 On March 23, 2023, Katie Hoff, Stop the Clot Ambassador and 3x Olympic medalist, urged Congress to allocate $5 million to the Centers for Disease Control and Prevention’s Division of Blood Disorders to improve blood clot awareness and education. Read more.


Sens. Grassley and Lujan Announce Passage of Resolution Recognizing DVT and PE Awareness Month 2023 

Sens. Chuck Grassley (R-Iowa) and Ben Ray Luján (D-NM), introduced the resolution, which passed March 22, 2023 with unanimous support. Read more.


NBCA Launches Advocacy Campaign Aimed at Increasing Federal Blood Clot Funding

In early 2023, NBCA rallied supporters to send letters to Congress urging them to increase blood clot awareness and education funding. A total of more than 5,000 letters from nearly all 50 states were submitted. Read more.


2022 Advocacy Updates


Reps. Axne, Burgess Raise Awareness for Blood Clots

Reps. Cindy Axne (IA-03) and Michael C. Burgess, M.D. (TX-26) introduced a resolution for Deep Vein Thrombosis and Pulmonary Embolism Awareness Month 2022. Read more.


Senate Passes Resolution Recognizing DVT And Pulmonary Embolism Awareness Month 2022

The National Blood Clot Alliance met with more than 30 Congressional offices this month, including Senators Chuck Grassley (R-Iowa) and Ben Ray Luján (D-N.M.), who introduced a Senate resolution recognizing the month of March as Deep Vein Thrombosis (DVT) and Pulmonary Embolism Awareness Month to help raise public awareness around this issue. On March 30, 2022, the resolution passed the Senate with unanimous support! Read more.


NBCA Virtual Fly In on Capital Hill

During March of 2022, the National Blood Clot Alliance completed a virtual fly-in on Capital Hill, meeting with over 30 Congressional offices to bring much needed awareness about blood clots. Read more.


NBCA Advocates For Affordable Access to All FDA-Approved Anticoagulants

The largest pharmacy benefits manager in the U.S., CVS Caremark (part of CVS Health), has made changes to their 2022 commercial formulary that reduces anticoagulant (blood thinner) choice for patients. The CVS Caremark decision goes against NBCA’s stance on patient choice. Read more.

  • Supported by 14 cardiovascular patient and provider organizations, this letter outlines the concerning changes to the formulary, how non-medical switching endangers patients and compounds existing disparities and how reversing this ill-advised decision will protect at-risk patients.
  • Say NO to non-medical switching. These decisions should be made by you and your doctor. Sign the pledge and add your voice to the thousands of patients impacted by this decision. Sign the pledge here.

 

 


 

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