On June 24, 2019 the Gastroparesis community held a rally in Washington, DC.
People came from all over the country to unify their voices, fighting for change, during this two day event. At home, were thousands of supporters who joined via a virtual rally and live feeds from the in-person rally. It was an incredible, empowering experience followed by legislative meetings with the House and Senate the next day.
The big push was for awareness and to garner support for the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019 (H.R. 3396). We were met with enthusiasm by both our representatives and their staffers and left with hope that our legislators would support us in our efforts.
Though the rally highlighted many of our issues, there is still much work to be done, and this served as only the first of many community activities to come. Our next event is Virtual Advocacy Day, on July 23, 2019, where we invite members and supporters of our community to contact their legislators and once again ask for support for H.R. 3396.
Collectively, we fight for all involved in our care – loved ones, medical professionals, insurance and pharmaceutical companies, and policymakers – to work together for our good. We wish to be valued as the unique individuals we are, to be believed, and to be treated with compassion and dignity by all who touch our lives. Further, we push for those in power to respect the seriousness of our illness, acknowledge the hardships that flow from it, fund research, support education and awareness, and recognize Gastroparesis as the debilitating condition we know it can often be.
We work toward a healthcare system composed of doctors and specialists who are informed about our illness, who are near enough and plentiful enough that we need not travel long distances for treatment, and who are readily available for appointments, so our care is not delayed. We seek physicians who acknowledge our humanity and respect our individual wishes and goals, who are willing to help us understand our care options and collaborate with each other and us to find treatment plans which improve our quality of life, as we define it, rather than abandoning us because we are “too complex” and there is “nothing more” they can do.
We urge researchers and pharmaceutical companies to search diligently for innovative, safe, effective, and affordable treatments and cures – and we call for adequate funding of such pursuits. We implore the FDA to streamline processes and expedite new drug approvals, and we ask our insurance companies to cover treatments which we know from personal experience help with our symptoms. We fight to be free to make our own choices and to weigh the risks of medications and therapies for ourselves.
We beseech our loved ones to look upon us with compassion and treat us gently, to believe this illness impacts our lives in meaningful and significant ways, and to respect and accommodate our very real physical limitations. We ask for their kindness, patience, and support, for their listening ears and accepting hearts, and for their assistance in spreading awareness.
We demand nothing short of a world in which all involved in our care are educated about our illness, comprehend its impact on our lives, offer support, respect our right to self-determination, aid in spreading awareness of our disease, and assist us in getting the help we so desperately need. We hunger for the day where we are no longer overlooked, unknown, taken for granted, mocked, or mistreated, but, rather, where we are heard, cared for, and valued by all those who hold the power to spread our message and transform our care.
We in the Gastroparesis community face daunting challenges, but we are not without hope, passion, ability, or recourse! We encourage providers, patients, patient groups, family and friends, and the public to educate others about this life-altering chronic illness, as we stand up, speak out, and fight to raise awareness in our quest for better treatments and, ultimately, a cure.