Gaucher Awareness Month recognized by Congress on October 24, 2023!
Raising awareness is a grassroots effort, and the more people involved, the louder and stronger our voice is to make change. Join us in being part of the solution in creating better lives for those with Gaucher disease.
Starting on October 1, 2023, International Gaucher Awareness Day, we will post a call to action each week for you to get involved and help raise awareness about Gaucher disease. Those who participate and complete all four activities throughout the month will be entered into a raffle to win a gift card. Check back weekly for that week’s call to action!
Start now and upload the Gaucher Awareness 2023 logo to all your social media profiles. You can download the link from our website here.
Upload the Gaucher Awareness Month artwork to your social media profiles. Download the artwork here.
We want people to know what Gaucher disease is. The details, like how it affects you and your daily life, what your symptoms are, what your needs are, whether you have treatment, how expensive your treatment is, how and what treatments have helped, if anyone else in your family has it, and anything else you’re willing to share.
Appeal for Action #1
Reach out to at least 5 people to let them know it’s Gaucher Awareness Month and you want to help raise awareness. Get personal and help people understand what Gaucher disease really is and how it affects you. If you’re doing this online, take advantage of making it viral. Use photos, create a fundraiser, ask people to forward on your information.
Call to Action #2
It’s time to contact your Congressperson!! Sign on to the following letter and urge your Member of Congress to support the H.R. 830: Help Ensure Lower Patient Copays Act (HELP Copays Act).
Access the letter here.
This legislation, which if passed, will help Gaucher disease patients maintain the accessibility and affordability of their treatments. The HELP Copays Act seeks to end the discriminatory practice of copay accumulator programs by ensuring all forms of copay assistance counts toward out of pocket levels. When you sign this general letter, we will address the letter to many different Representatives and Senators and send them out on your behalf.
This year a bipartisan group of legislators introduced H.R.830 in the U.S. House of Representatives. This bill requires health insurance plans to apply copay assistance to an individual’s cost-sharing obligations (i.e., deductible and out-of-pocket maximum) for their insurance. If the bill passes, copay accumulator programs, which do not count assistance toward deductibles or out-of-pocket maximums, would be banned for health insurance plans regulated at the federal level, such as those offered by large employers. We want this! This bill attempts to close the gap between state co-pay accumulator bans that are passed to regulate private commercial insurance and a federal ban which would cover commercial insurance that is offered through employers that self-fund their employee plans.
Thank you for getting involved! We can’t pass this without your support and urge you to click on the link here to access the letter to sign.
If you have any questions or want to become more involved in the advocacy efforts of the Gaucher Community Alliance please contact our Legislative Coordinator, James Romano.
Call to Action #3
Sign on to our letter here to urge Members of Congress to support home infusions for Medicare recipients.
We need your participation in helping Medicare recipients to get their infusions at home. The Gaucher Community Alliance is developing the LSD Advocacy Coalition, a nationwide advocacy coalition with other lysosomal storage disease organizations. Please help this effort by signing on to the attached letter that urges Members of Congress to support and co-sponsor legislation which would allow Medicare beneficiaries with Gaucher disease and other lysosomal storage diseases to receive their needed infusions at home.
Currently, Gaucher and other LSD patients with traditional Medicare are unable to receive their ERT infusions at home. Because of a Medicare prohibition on home services, only individuals who are physically unable to leave their house are permitted to get their infusions at home. This means our Medicare community must seek infusions in hospitals or infusion centers, often resulting in long travel days and exposure to germs. This increases the risk for infection with COVID-19 and other illnesses.
The Gaucher Community Alliance, along with our lysosomal disease organization partners, are proposing a bill to provide coverage and payment of home infusion therapies for lysosomal storage disorders under Medicare Part B. This draft bill has not been introduced yet as we are looking for legislator champions and co-sponsors. This letter will bring the issue to the attention of Members of Congress.
Sign on to the letter here!!
If you have any questions or want to become more involved in the advocacy efforts of the Gaucher Community Alliance please contact our Legislative Coordinator, James Romano.
Call to Action #4
Cook an anti-inflammatory recipe, send us a photo, and let us know how it is!
Inflammation is part of the body’s defense mechanism. It is the process by which the immune system recognizes and removes harmful and foreign stimuli and begins the healing process. There are different types of inflammation, both acute and chronic, and healthy eating is one of the ways we can help to ease chronic inflammation in our bodies.
See what the experts say on inflammation in our bodies:
National Institutes of Health
Mayo Clinic
Harvard Medical School
Nature Medicine
Cook one of the many recipes here, snap a photo, and email it to us at info@gauchercommunity.org. Don’t forget to let us know how it went when you email!
This is the last call-to-action for Gaucher Awareness Month. In your email don’t forget to email us proof of completing all 4 calls to action and we’ll enter you into the raffle to win a gift card.
Find the anti-inflammatory recipes here!!
Gaucher Awareness Month Ends. Send us proof of your Calls to Action.
Drawing for and announcement of raffle winner.
Raising awareness of Gaucher disease helps to improve early diagnosis, which can save lives. It informs policy makers of the personal and financial struggles faced by rare disease families and encourages funding of necessary research to bring new treatments to market. It fights discrimination against people with rare diseases and special needs, and it reminds those of us who are affected that by being part of a greater community we are not alone or isolated. We have somewhere to turn if we need help.
We believe in the privilege of having a voice and the power of grassroots efforts to mobilize and strengthen that voice. So we rely on our Gaucher community – including patients, caregivers and families; medical experts and researchers; and the pharmaceutical and biotechnology industry – to help us raise awareness. It is a large effort, but if everyone participates, we can raise the profile of this disease so that we are recognized. Recognition will bring us more of the things we need to help us receive treatment, manage our disease and live longer, fuller lives.
