In April, Hemophilia Federation of America welcomed Mary Catherine Moffett as our new Vice President of Policy and Advocacy. She shares her thoughts on what it means to advocate for bleeding disorders.
By Mary Catherine Moffett, MSW, Vice President of Policy and Advocacy
Advocacy for people with bleeding disorders is the most powerful resource you’ll have.
What I could say about advocacy is this: Advocacy plays a crucial role in raising awareness about bleeding disorders and advocating for improved access to care, treatment and support services for individuals with these conditions. By advocating for the needs of people with bleeding disorders, advocates can help to ensure that they receive the necessary medical care, education and resources to manage their condition effectively and live full and productive lives.
But what I have learned from you in my short time as a non-member of the bleeding disorders community and as a new HFA leadership team member who is still learning about life as a bleeder is that you already know this, because you live this every day in every aspect of your life. I know that alongside medical advancements of the 1950s, ‘60s and ‘70s, the community faced extraordinarily incomprehensible setbacks in the 1980s and ‘90s.
I understand that so many living with hemophilia today have had to advocate for your treatment needs
and safety your entire life. And alongside this living generation of experienced advocates, and the memory of community member advocates no longer here, arises new generations of community members who will have access to therapies perhaps never before imagined.
What I know and believe about this superpower you possess is how advocacy gives you the ability to bring about policy changes that improve the quality of life for you and your family now, and all members of the community who will come to be. Advocates can work with lawmakers, healthcare providers and other stakeholders to push for legislation that ensures access to affordable and comprehensive healthcare coverage, as well as increased funding for research and treatment options. In this community alone, your stories produced unprecedented regulatory, public health and education campaigns, because of a groundswell of voices. The Ryan White CARE Act, the Ricky Ray Act, and unprecedented public health and regulatory policy change, all happened because of the powerful organized advocacy of many— without The Committee of Ten Thousand, these changes would never have happened.
In recent years, the Affordable Care Act changed the game for people living with serious, life-threatening and chronic conditions. Individual advocacy played a crucial role in the passage of the ACA. The ACA, also referred to as Obamacare, was signed into law in 2010 and represented an overhaul of unprecedented significance to the country’s healthcare system. Various advocacy efforts from individuals and organizations contributed to the passage of this landmark legislation that especially impacted the bleeding disorders community by enshrining protections from loss of coverage or access to care.
Grassroots Campaigns
Individual advocacy groups and grassroots organizations played a key role in raising awareness about the need for healthcare reform and mobilizing support for the ACA. Advocates organized rallies, town hall meetings, and outreach events to educate the public and lawmakers about the benefits of the legislation.
Personal Stories
Individuals affected by the shortcomings of the healthcare system shared their personal stories to illustrate the need for reform. By highlighting real-life experiences of individuals who struggled to afford healthcare or were denied coverage due to pre-existing conditions, advocates humanized the issue and made a compelling case for change.
Lobbying Efforts
Individual advocates and advocacy organizations lobbied lawmakers at the local, state and national levels to garner support for the ACA. Advocates met with legislators, wrote letters, made phone calls, and participated in advocacy days to advocate for healthcare reform and push for the passage of the legislation.
Social Media Campaigns
The rise of social media platforms provided a powerful tool for individuals to amplify their voices and advocate for healthcare reform. Advocates used social media to share information, organize campaigns, and engage with policymakers and the public to build support for the ACA.
Patient Advocacy Organizations
Patient advocacy organizations representing individuals with specific healthcare needs, such as chronic conditions or disabilities, played a vital role in advocating for the ACA. These organizations provided a platform for individuals to come together, share their experiences, and advocate for policies that would improve access to quality, affordable healthcare for all.
I can share personally that while working with the blood cancer community in the years leading up to and following the passage of the Affordable Care Act, I listened endlessly to stories of patients who were dropped from their health plans, denied care or coverage and faced health and financial crisis after crisis, living in fear and ever-present anxiety. By sharing their stories, organizing campaigns, lobbying lawmakers, and leveraging social media, individual advocates helped drive the push for comprehensive healthcare reform and ultimately contributed to the passage of this landmark legislation that benefited so many patients and families like yours.
In closing, I leave you with this consideration: Carry on this legacy. Help be part of the history to be celebrated years from now. Share your story with your lawmaker to build a relationship and a champion for making change. Follow along the work HFA is continuing to ensure policies protect this community now and into the future, and that we have a voice in those decisions. Take action when it’s needed—if not you, then who?
Let’s make a difference together.
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