Legislative Talking Points
Much like writing a letter to the editor, preparing to speak with your elected official will take preparation and accuracy. TMS has prepared talking points to help you do this. Please remember to be professional. Identify yourself as a mast cell disease patient advocate. Discussions should be brief and to the point. Use simple language, avoiding jargon. Personalize your experience by briefly sharing personal stories in a manner your legislator can relate to. End with a call to action, if appropriate/relevant.
Identify who you are and your mission:
My name is____________________, I am raising awareness for mast cell diseases, on behalf of families and myself struggling with Mast Cell Disease and our support organization TMS. TMS, The Mastocytosis Society is a 501(c)3 nonprofit organization dedicated to supporting patients affected by Mastocytosis or Mast Cell Activation Diseases as well as their families, caregivers, and physicians through research, education, and advocacy. I have a Mast Cell disease (or my loved one, or child has a mast cell disease…whichever is your circumstance)
Identify the subject and issue of your discussion:
Mast cells are immune system cells that are involved in allergic reactions and inflammatory responses in the body, from minor swelling and stuffy noses to life-threatening, full-blown anaphylaxis.
Mast cell diseases may come in a variety of forms and symptoms and can vary from patient to patient. However, what all patients share is dysfunction in how mast cells operate within their body, whether in how they grow and accumulate or behave. As a result, patients with mast cell diseases often suffer tremendously due to constant exposure to seemingly innocuous stimuli that trigger acute reactions. Stimuli may include foods, alcohol, chemicals, medications, odors, smoke, weather, hot & cold temperatures, friction or vibration, insect stings & bites, fatigue, exercise, and stress. Reactions may include flushing, itching, skin rashes, headaches, gastrointestinal symptoms, low blood pressure, difficulty breathing and anaphylaxis. (This would be a good time to interject a brief personal experience story).
Identify the impact:
Often patients go many years before being properly diagnosed, frequently being dismissed by physicians unfamiliar with mast cell diseases. Misdiagnoses and lack of early intervention are shattering as patients find it difficult to live an independent life, maintain jobs, and be involved with their families and community. The economic impact on both families and the healthcare system is devastating. The social and emotional impact even greater. Even after being diagnosed, patients struggle with limited treatment options, insurance barriers, the financial burden of care and access to appropriate care. Families’ and caretakers lives are equally devastated as they struggle to balance work and life, taking on the role of caregiver and often primary provider. (If you have felt the impact of the above, share a brief example with your representative. For example, if your family went from a two-income household to a one income household due to your sick spouse’s inability to work explain how this impacted you. Did you lose your home? Was it harder to pay your bills or did bills go into default? Did you have to move? Was your transportation and/or childcare affected? Did you lose your healthcare? Are you unable to access your life saving injectable epinephrine or other medications because of ongoing drug shortages)?
Call to action:
I am raising awareness about mast cell diseases to help you as a law-maker understand the challenges myself and my family face living with a rare disease and ask you to support legislation that sustains and protects our right to earlier diagnosis, research, and access to current and potential life-changing treatments. Our patient population has been deeply affected by the drug shortage crisis over the past year. Lifesaving medication that should be easily accessible has been on backorder for months leaving patients in dire situations, particularly when facing a mast cell crisis similar to shock. As the issues come to your attention we ask that you support measures that will stop future drug shortages. We will continue to educate you on how drug shortages impact us while letting you know of legislation that may help in solving this problem.
Thank your representative for their time and follow up with an email or handwritten note of gratitude.
Together we are mastostrong!