GASTROPARESIS AWARENESS MONTH 2021 PROJECT

 Every year, Gastroparesis: Fighting for Change supports Gastroparesis awareness by engaging in a themed campaign designed to highlight the issues, needs, and goals of our community. This year’s theme is #ThisIsGP.

As part of this effort, I would like to collect photos, quotes, and/or stories that demonstrate what you have lost due to this illness. Think of it as, “I have lost X, and I want it back!” You are also welcome to include how you have dealt with your losses or how you have worked around or overcome them.

You are welcome to share anything you think relates to or demonstrates your loss and/or your coping methods. The goal is to help the outside world understand that this is more than a tummy ache. They need to see the true effects of GP on your life — physical, mental, social, financial, and spiritual.

To submit, please share your entries in the form below.  Collection will be ongoing, so there is no set deadline… but the earlier, the better, as I will need to prepare graphics and other materials by August 1, 2021.

Thank you so much for your help!

Click or drag a file to this area to upload.

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Gastroparesis Awareness 2021 T-Shirt Away

Enter for a chance to win this t-shirt in our first giveaway for

Gastroparesis Awareness Month 2021!!!

  Good luck!

Note: This giveaway is only available to those with a shipping address in the United States.

 

Entries for this giveaway are closed.

 

Entries will be accepted from 6/25 at 8 AM until 6/27 at 12 PM, EDT.

Winners will be announced the morning of 6/28.

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Proclamations – August 2021

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S. 464 / H.R. 2163 (Safe Step Act)

Debra Reames

I find it reprehensible that the insurance companies have any authority to practice medicine without a license. Making mid-year decisions to stop covering certain medications is exactly that. When done to save money rather than for the good of the patient, it is heinous. It is also breaking faith in their coverage contract with the… Read more “Debra Reames”

Joyce Bowman

My daughter has been suffering from gastroparesis since 2013. We’ve been through all the “fail first” protocol and it’s extremely frustrating! As you watch a loved one who hasn’t eaten or drank by mouth for over 3 years, is on tube feeds to survive, had a gastric stimulator placed (didn’t work), and be told by… Read more “Joyce Bowman”

Kristine Bishop

Because of the step therapy I have been denied treatment by insurance doctors have requested. I have been denied medications/nutrition requested by doctors, as the doctors first choice of treatment. Therefore, with insurance, I have ended up paying thousands of dollars for medication, nutrition, treatment after following insurances recommendations. Only to have them fail. At… Read more “Kristine Bishop”

Amy Speers

I lost 87 pounds and was so sick weak make you go threw several test drugs to see if they work instead of giving a prescription that they know will work

Karen Engebretson

This is an important issue for anyone with a severe debilitating medical condition. Gastroparesis is one of those issues (which affects my health), but there are many more. Patients suffer when insurance companies hold up testing or “review” medical information by unqualified individuals or persons who fail to research that condition

Heather Rogers

In 2007 I had a giant fibroid that took up my abdomen & pushed my intestines through my diaphragm into my chest. When they removed it they took my ovary, my appendix, & told me to see a surgeon right away for the diaphragm repair as they couldn’t fix it when they did the removal… Read more “Heather Rogers”

Rosalind Signorino

To whom this concerns, I’ve been suffering from a rare disease called Gastroparesis it’s very debilitating daily, people are dying with this disease & other diseases because we are being guinea pigged by insurance companies being allowed to cover medications that do not work. Please hear our cry & Stop insurance companies from acting like… Read more “Rosalind Signorino”

Lisa Haase

There are no other reasons than I am literally slowly starving to death!! I’ve tried meds in the order it “had” to be. I’m on tpn and a j tube. (Feeding tube). This day and age I should not have to follow suit just to have a diagnosis with no cure.

Tonya Henry

I have personally been affected. Who wants to keep trying medicine that doesn’t work. My dr actually said, it probably won’t work, but we have a process to follow. Tried useless meds that created horrible effects. It took going through several medicines to get to the one they wanted me to try. This is wrong.… Read more “Tonya Henry”

Sandra Adams

I have Chronic incurable diseases. One is Gastroparesis. I can’t afford to have my doctor’s and insurance play with my life. Doctor’s know do no harm. Why is the government getting involved with our care. I have been ill for 20 years and never have been an addict. My doctor’s know what I truly need.… Read more “Sandra Adams”

Debbie Popp

I have been put through Step Therapy multiple times and at one point it caused me to be forced into a surgery that may have been prevented if my medication would have been approved. Now I will never know if the medication would have saved my colon. We need our doctors to be able to… Read more “Debbie Popp”

Ashley Daniel

So my experience with step therapy is very madning for me. There is only 1 FDA approved medication for Gastroparesis Reglan. So the doctor naturally prescribed it. What choice does she have right? I call to get the status and a prior authorization is need. Why would one be need for the only med approved.… Read more “Ashley Daniel”

Stephanie Davis

Having gastroparesis turned my world upside down one minute I’m a normal woman the next I’m in and out of the hospital unable to even keep water down. I had to fight just for the right just to be able to try and have a semi normal life. We in the GP community need access… Read more “Stephanie Davis”

Heather Gillon

I have health issues on top of health issues. It has taken years to sort them out. Recently I needed to be put on a medication to try and keep me in the work force and off of disability. My insurance denied the medicine, stating I must try three other specific medications first. When my… Read more “Heather Gillon”

Sedaka Jones

I’ve suffered my whole life with severe allergies. I’ve tried several medications and some work, and done didn’t. The medications that was next up for me to try I couldn’t receive because I never tried a medication on the preferred list first. Needless to say, the injections was denied because of that and I basically… Read more “Sedaka Jones”

Dena Shover

Failed attempts on staying on GP diet, continued to have abd pain, nausea and vomiting. Also put on erythromycin which quit working after a few months, now dx with heart block, and can only have max 4 domperidone a day, not working. Waiting to see if ins will pay for botox injection. If not, can’t… Read more “Dena Shover”

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. 464 / H.R. 2163). 

You can find additional information and read the text of the bill at https://www.congress.gov/bill/117th-congress/house-bill/2163 and https://www.congress.gov/bill/117th-congress/senate-bill/464 .

You can find contact information for your representatives at https://www.govtrack.us/.

Rep. Ruiz, Raul [D-CA-36] *(original sponsor)

Cosponsor Date Cosponsored
Rep. Wenstrup, Brad R. [R-OH-2]* (original cosponsor) 03/23/2021
Rep. McBath, Lucy [D-GA-6]* (original cosponsor) 03/23/2021
Rep. Miller-Meeks, Mariannette [R-IA-2]* (original cosponsor) 03/23/2021
Rep. Bonamici, Suzanne [D-OR-1] 04/16/2021
Rep. Palazzo, Steven M. [R-MS-4] 04/16/2021
Rep. Blunt Rochester, Lisa [D-DE-At Large] 04/16/2021
Rep. Manning, Kathy E. [D-NC-6] 04/16/2021
Rep. Fitzpatrick, Brian K. [R-PA-1] 04/16/2021
Rep. Allen, Rick W. [R-GA-12] 04/16/2021
Rep. DelBene, Suzan K. [D-WA-1] 04/16/2021
Rep. Walorski, Jackie [R-IN-2] 04/16/2021
Rep. Joyce, John [R-PA-13] 04/16/2021
Rep. Suozzi, Thomas R. [D-NY-3] 04/16/2021
Rep. DeGette, Diana [D-CO-1] 04/16/2021
Rep. McCollum, Betty [D-MN-4] 05/07/2021
Rep. Kilmer, Derek [D-WA-6] 05/07/2021
Rep. Case, Ed [D-HI-1] 05/07/2021
Rep. Hill, J. French [R-AR-2] 05/07/2021
Rep. Kuster, Ann M. [D-NH-2] 05/07/2021
Rep. Pingree, Chellie [D-ME-1] 05/07/2021
Rep. Scanlon, Mary Gay [D-PA-5] 05/07/2021
Rep. Guest, Michael [R-MS-3] 05/07/2021
Rep. Crow, Jason [D-CO-6] 05/07/2021
Rep. Green, Mark E. [R-TN-7] 05/07/2021
Rep. Brady, Kevin [R-TX-8] 05/07/2021
Rep. Davids, Sharice [D-KS-3] 05/07/2021
Rep. Rutherford, John H. [R-FL-4] 05/07/2021
Rep. Ross, Deborah K. [D-NC-2] 05/07/2021
Rep. Krishnamoorthi, Raja [D-IL-8] 05/07/2021
Rep. Stevens, Haley M. [D-MI-11] 05/07/2021
Rep. Levin, Andy [D-MI-9] 05/07/2021
Rep. Moore, Gwen [D-WI-4] 05/07/2021
Rep. Davis, Rodney [R-IL-13] 05/11/2021
Rep. Pence, Greg [R-IN-6] 06/16/2021
Rep. Bourdeaux, Carolyn [D-GA-7] 06/16/2021
Rep. Lynch, Stephen F. [D-MA-8] 06/16/2021
Rep. Kinzinger, Adam [R-IL-16] 06/16/2021
Rep. Schrier, Kim [D-WA-8] 06/16/2021
Rep. Trone, David J. [D-MD-6] 06/16/2021
Rep. Cohen, Steve [D-TN-9] 06/16/2021
Rep. Napolitano, Grace F. [D-CA-32] 06/16/2021
Rep. Cheney, Liz [R-WY-At Large] 06/16/2021
Rep. Price, David E. [D-NC-4] 06/16/2021
Rep. Bacon, Don [R-NE-2] 06/16/2021
Rep. Lamb, Conor [D-PA-17] 06/16/2021
Rep. Gottheimer, Josh [D-NJ-5] 06/16/2021
Rep. Rush, Bobby L. [D-IL-1] 06/16/2021
Rep. Strickland, Marilyn [D-WA-10] 06/16/2021
Rep. Johnson, Henry C. “Hank,” Jr. [D-GA-4] 06/16/2021
Rep. Porter, Katie [D-CA-45] 06/16/2021
Rep. Grothman, Glenn [R-WI-6] 06/16/2021
Rep. Yarmuth, John A. [D-KY-3] 06/16/2021
Rep. Amodei, Mark E. [R-NV-2] 06/16/2021
Rep. Tonko, Paul [D-NY-20] 06/16/2021
Rep. Aguilar, Pete [D-CA-31] 06/16/2021
Rep. Mace, Nancy [R-SC-1] 06/16/2021
Rep. Brownley, Julia [D-CA-26] 06/16/2021
Rep. Johnson, Dusty [R-SD-At Large] 06/16/2021
Rep. Cole, Tom [R-OK-4] 06/16/2021
Rep. Gonzalez, Anthony [R-OH-16] 06/16/2021

Source:  H.R. 2163 – Safe Step Act:  https://www.congress.gov/bill/117th-congress/house-bill/2163/cosponsors

Sen. Murkowski, Lisa [R-AK]*(original sponsor)

Cosponsor Date Cosponsored
Sen. Hassan, Margaret Wood [D-NH]* (original cosponsor) 02/25/2021
Sen. Cassidy, Bill [R-LA]* (original cosponsor) 02/25/2021
Sen. Rosen, Jacky [D-NV]* (original cosponsor) 02/25/2021
Sen. Hyde-Smith, Cindy [R-MS]* (original cosponsor) 02/25/2021
Sen. Gillibrand, Kirsten E. [D-NY]* (original cosponsor) 02/25/2021
Sen. Sinema, Kyrsten [D-AZ]* (original cosponsor) 02/25/2021
Sen. Capito, Shelley Moore [R-WV]* (original cosponsor) 02/25/2021
Sen. Hirono, Mazie K. [D-HI]* (original cosponsor) 02/25/2021
Sen. Tillis, Thom [R-NC]* (original cosponsor) 02/25/2021
Sen. Shaheen, Jeanne [D-NH]* (original cosponsor) 02/25/2021
Sen. Cramer, Kevin [R-ND]* (original cosponsor) 02/25/2021
Sen. Merkley, Jeff [D-OR]* (original cosponsor) 02/25/2021
Sen. Blumenthal, Richard [D-CT]* (original cosponsor) 02/25/2021
Sen. Marshall, Roger W. [R-KS] 04/13/2021
Sen. King, Angus S., Jr. [I-ME] 04/15/2021
Sen. Bennet, Michael F. [D-CO] 05/11/2021
Sen. Collins, Susan M. [R-ME] 05/11/2021
Sen. Smith, Tina [D-MN] 05/12/2021
Sen. Scott, Tim [R-SC] 05/13/2021
Sen. Tester, Jon [D-MT] 05/18/2021
Sen. Casey, Robert P., Jr. [D-PA] 05/25/2021
Sen. Boozman, John [R-AR] 05/25/2021
Sen. Moran, Jerry [R-KS] 05/27/2021
Sen. Lummis, Cynthia M. [R-WY] 06/10/2021
Sen. Wicker, Roger F. [R-MS] 06/10/2021
Sen. Cortez Masto, Catherine [D-NV] 06/22/2021
Sen. Warnock, Raphael [D-GA] 07/21/2021


Source: 
S. 464 – Safe Step Act: https://www.congress.gov/bill/117th-congress/senate-bill/464/cosponsors

Support S. 464/H.R. 2163 (Safe Step Act)
Please ask your legislators to cosponsor S. 464/H.R. 2163 (Safe Step Act)!

Contact Information

Additional Information

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Demand Recognition

Please complete the form below to be included in our “Demand Recognition” campaign, which outlines some of the major changes we seek and the expectations we have for the medical community.

Digestive disorder/disease patients are frustrated by the lack of understanding, knowledge, and appropriate medical care surrounding our conditions, and it is time to make a change.

 WE DEMAND:

*Recognition of our humanity – We are not statistics, case studies, or room numbers. We are your fellow human beings, individuals with a passion and desire to live normal, full lives. We have families and loved ones with whom we wish to share a future. We have hopes, dreams, and goals we wish to fulfill. We have a chronic illness but we have not lost our will to live and thrive.

 *Recognition of our struggle – We endure hunger, pain, nausea and vomiting, bloating, weight loss/gain, early satiety, acid reflux, fatigue, and a whole host of other debilitating symptoms which often limit our daily activities and prevent us from living normal lives.  Further, we frequently battle exhaustion, depression, anxiety, feelings of worthlessness, shame, and guilt, and mental anguish beyond compare.  We long for understanding, compassion, empathy, and acknowledgment of the serious mental and emotional hardships which accompany our illness.

 *Recognition of our need for proper diagnosis & treatment – We seek standardized protocols and procedures for diagnostic testing as well as thorough explanations and follow-up regarding the results of such tests.  We seek suitable patient education and resource materials for all who are diagnosed upon the moment of diagnosis and urge you to provide patients with the latest knowledge of the nature of our illness, our immediate and future treatment options, emotional/mental health resources/referrals, dietary assistance, support resources, and instructions regarding follow-up and emergency care. 

 *Recognition of self-reported symptoms, patient knowledge, & right to self-determination – We have a right to be heard and understood, to be believed when we speak of our symptoms, to express our concerns and convey our own knowledge and experiences regarding our condition, to refuse and suggest treatments, and to share in decision-making concerning all aspects of our care.  We are individuals and should be treated as such. 

 *Recognition of the need for proper education of all medical professionals – We urge you to properly educate medical students and all physicians involved in our care through curricula, continuing education classes, training sessions at the point of care, and other means as necessary and suitable.  We encounter many in the medical field who know little of our illness and cannot offer us appropriate care.  We have a right to knowledgeable, professional medical personnel at all points of care.

 We petition you to usher in the changes we seek.  We deserve better – and we demand better.

Demand Recognition
Digestive disorder/disease patients are frustrated by the lack of understanding, knowledge, and appropriate medical care surrounding our conditions, and it is time to make a change.

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