Legislation

Below are some of the bills that might be beneficial to our community.  We will be following these bills and updating you on the progress.

S. 464 / H. R. 2163  Safe Step Act

To amend the Employee Retirement Income Security Act of 1974 to require a group health plan (or health insurance coverage offered in connection with such a plan) to provide an exceptions process for any medication step therapy protocol, and for other purposes

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

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”

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”

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”

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”

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.

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

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”

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”

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”

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”

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”

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

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”

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”

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)

CosponsorDate 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

 


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)

 

CosponsorDate 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


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)!

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12 years ago today

12 years ago today is the 1st time I remember throwing up. I was diagnosed finally in 2011. I’m lucky to still be here. And still can’t find a good doctor that will help me. At my lowest I’ve weighed 108 pounds and I just turned 60 in July. I would be more than glad to answer any questions anyone has. It’s a horrible painful disease that needs a cure or at least more understanding doctors and better treatment. I have been called a drug seeker more than once. – Tammi Parker

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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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Ostomy Awareness Day 2020

In celebration of Ostomy Awareness Day, Debbie Popp, from Gastroparesis Fighting for Change, interviewed a group of ostomates, asking them to share their journeys of living life with an ostomy.  We are proud to present this video in the hope that it will help others understand they are not alone in their struggles and in the celebration of their triumphs.  A special thank you goes out to all who participated in this video!

There are many ostomates across the world who join together in support groups, lifting each other up and listening while we vent.  Nobody is alone in this! 

There are many reasons one might need an ostomy, including:

  • Crohn’s Disease
  • Ulcerative Colitis
  • Cancer (colorectal, bladder, cervical and more)
  • Diverticulitis (perforation or abscess)
  • Birth Defects (Hirschsprung’s, FAP, Spina Bifida)
  • Abdominal Trauma
  • Motility Disorders (Colonic Inertia, Chronic Intestinal Pseudo-obstruction)
  • Irritable Bowel Disease

Whether an ostomy is the result of planned or emergency surgery, temporary or permanent, it is a lifestyle change.  Many ostomates attest that having an ostomy saved their lives or gave them better quality of life.  Initially, it can be difficult, and there are many challenges to overcome, but there is no need to face it alone.  The stigma of having an ostomy is changing with every voice that speaks out!

Today, on Ostomy Awareness Day, celebrate by joining one of the many Facebook events:

From Crohn’s & Colitis Foundation: Join us at 12 p.m. ET on October 3 for a special Facebook Live in partnership with the United Ostomy Associations of America (UOAA). We’ll be discussing all things ostomy and awareness related with Gina Day, BSN, RN, CWON, and IBD patients Chealynn Feaster and Ryan Van Voorhis. Watch the chat live: www.facebook.com/ccfafb.

From United Ostomy Associations of America:  This year we are celebrating the 10th Anniversary of National Ostomy Awareness Day. Join with UOAA and the entire ostomy community on Saturday, October 3, 2020 to spread the facts about life-saving ostomy surgery and stop stigmas once and for all. #OstomiesAreLifeSavers #ostomyDay2020 Check out the many exciting virtual events such as the Run for Resilience Ostomy 5k, sponsor events and many great activities planned for the day. You can make an impact. Go Live on your own Facebook Page at 7 pm ET and tell your friends how ostomy surgery saved or changed your life and help smash stigma! Participate in the event that starts at 5 AM EST:  https://www.facebook.com/events/313284406630170.  

Sources: Crohn’s & Colitis Foundation, United Ostomy Associations of America

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