We created this website to provide the public with additional information regarding Gastroparesis. It is our goal to connect users with our Facebook advocacy group, “Gastroparesis: Fighting for Change.”
Our Gastroparesis: Fighting for Change Facebook group was formed to unite people with Gastroparesis and other digestive and motility disorders to work for change. It is not a typical GP support group, as we do not discuss personal medical issues. Rather, we established this as a place where members can discuss ideas regarding our mission, vision, goals, needs, services, and resources to work toward solutions. So if you want to make a difference for our GP community, we encourage you to share your ideas! Additionally, we need you to help us fight for changes in legislation! Also, you can help raise funds! Finally, you can help spread awareness! Please join our main group. We would love to have you!
You can find links to our Community Page and our Advocacy Group on our Resources Tab.
In order to accomplish our goals, we will be sharing many ways you can get involved on our Campaigns Tab.
Because of your hard work, in less than one week, we were able to contact 185 congressional offices, representing 349 constituents! Many thanks to all who have contributed by submitting your personal stories, making telephone calls, and sharing posts. This is #GPStrong!
If you have not yet submitted your story and would like to do so in support of H. R. 3396, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019, please visit https://curegp.org/hr3396/. Once your form is completed, we will forward it to your representative.
Join the #WarOnGP as we continue to fight together for awareness, patient-centered care, better treatments, and a cure!
For the last 6 years my son has suffered terribly with gastroparesis. He began with it at 6 years old and is now 12. He is no longer able to attend traditional school and spends most days in pain. Because of the lack of funding, there are very few medications that can be used and there is even less research that has been done to help children. They are basically told to just suffer. It is absolutely the worse thing in the world to be told there is not much that can be done for your child. I look at cancer funding for children and I wonder why my child does not matter as much as those children. All children matter. I understand budgets, I understand the number of people with the disease, I get it…but until someone like you stands up for someone like us…my child will continue to suffer. We understand that a vote won’t even necessarily help our son, but if we can be brave, and stand together then we can at least say, that today’s suffering was not in vain, because tomorrow will be a better day for those that come behind us. Please join me in standing strong and please co-sponsor HR 3396. There are a lot of things we can stand for. I would be honored if you would stand with me and say that you want the suffering of children and adults with gastroparesis to end. Thank you for your consideration. I greatly appreciate your time and any thought that is given to this. I decided to share a picture of our family when things are good. We try to focus on those days. My son is the youngest one and he is tough as nails with the wisdom of a man much older. Thanks again for your time.
This holiday season, enter to win one of 4 free items : 3 water bottles and 1 tote bag! To participate, simply complete the form below and help us by sharing your advocacy story and ideas.
This contest ends at 12:00 PM ET on December 6, 2019. Winners will be chosen at random, and items will be shipped at the completion of the contest.
I am 22 years old. I started nursing school in June of 2018. Nursing school is hard enough as a healthy person.
I got a kidney infection in the end of November of 2018 for which I was hospitalized for. That began a severe struggle with my health. I stopped being able to hold down any food (even water). After multiple hospitalizations, one of them lasting a month.
I was officially diagnosed with severe gastroparesis in April of 2019 after I had lost 60 pounds and my gall bladder removed. They couldn’t control my nausea and vomiting with any diet or medication, so I ended up with a surgically placed J tube. I have since been hospitalized 3 more times, not including the ER visits from passing out at clinicals in which I was not admitted.
I currently have not kept down anything I have ingested for about a year now, despite the gastric pacemaker I had placed in June. Despite the 4 surgeries I have had this year, the accumulated 2 months of the last year I have spent in a hospital bed because of this disease along with kidney stones and an ovarian cyst that burst, and the malnourishment that keeps me exhausted most of every day, I graduate nursing school in 38 days with a 3.9 GPA.
I also accepted a position on my dream unit (an ICU) for after I graduate. I am still learning to live with my feeding tube and still struggle to remain positive. I have my days where I cry and want nothing more than to be able to enjoy a glass of ice cold water and gain some weight. I still have hope that, one day, I will be able to get rid of my feeding tube and keep down something. I am so excited that I am going to graduate with my BSN despite my bad luck with my health. This has been easily the hardest thing I have ever done in my life. Thank you for letting me share.
On Wednesday, November 13, 2019, the Digestive Disease National Coalition (DDNC) will coordinate a National Day of Advocacy to encourage federal legislators to address step therapy reform by supporting the Safe Step Act (H.R. 2279/S. 2546).
Throughout the day, advocates from around the country will urge their members of Congress to improve patient access by cosponsoring the Safe Step Act, which would establish important protections for patients facing step therapy and fail-first protocols.
Step Therapy and the Safe Step Act
Otherwise known as a “fail first” protocol, step therapy is an insurance practice which mandates that patients try and fail medications preferred by their insurer before they can utilize treatments prescribed by their doctor. While the practice can sometimes be used to contain the costs of prescription drugs, it can also have serious negative impacts on patients, including delayed access to the most effective treatments, severe side effects, and irreversible disease progression.
Step therapy protocols may ignore a patient’s unique circumstances and medical history. That means patients may have to use medications that previously failed to address their medical issue, or – due to their unique medical conditions – could have dangerous side effects.
If left unchecked, the practice can impede the doctor-patient relationship and cause serious harm to patients. The Safe Step Act establishes important safeguards that protect patients when step therapy is mandated by establishing a transparent appeals process and an expedited review for at risk-patients.
The Safe Step Act is a balanced public policy proposal that works to reform step therapy by:
• Establishing a clear exemption process. The bill requires that insurers implement a clear and transparent process for a patient or physician to request an exception to a step therapy protocol.
• Establishing an expedited review for at-risk patients. The bill requires a group health plan to respond to an exemption request within 72 hours in all circumstances, and 24 hours if the patient’s life is at risk.
Please ask your congressional representatives to cosponsor the Safe Step Act (S. 2546 / H.R. 2279).
You can find additional information and read the text of the bill at https://www.congress.gov/bill/116th-congress/house-bill/2279 or https://www.govtrack.us/congress/bills/116/hr2279and https://www.congress.gov/bill/116th-congress/senate-bill/2546or https://www.govtrack.us/congress/bills/116/s2546.
