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