S. 2546 / H.R. 2279 (Safe Step Act)

Step Therapy National Day of Advocacy

Support the Safe Step Act

November 13, 2019

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/hr2279 and https://www.congress.gov/bill/116th-congress/senate-bill/2546 or https://www.govtrack.us/congress/bills/116/s2546.
 

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]*04/10/2019
Rep. Price, David E. [D-NC-4]05/02/2019
Rep. Rice, Kathleen M. [D-NY-4]05/02/2019
Rep. Van Drew, Jefferson [D-NJ-2]05/02/2019
Rep. Grijalva, Raul M. [D-AZ-3]05/02/2019
Rep. Kelly, Robin L. [D-IL-2]05/02/2019
Rep. Cohen, Steve [D-TN-9]05/02/2019
Rep. Roe, David P. [R-TN-1]05/02/2019
Rep. Moulton, Seth [D-MA-6]05/02/2019
Rep. Rose, Max [D-NY-11]05/02/2019
Rep. Doyle, Michael F. [D-PA-18]05/02/2019
Rep. Chabot, Steve [R-OH-1]05/02/2019
Rep. Joyce, John [R-PA-13]05/02/2019
Rep. Fitzpatrick, Brian K. [R-PA-1]05/02/2019
Rep. Aguilar, Pete [D-CA-31]05/02/2019
Rep. Bera, Ami [D-CA-7]05/02/2019
Rep. Stefanik, Elise M. [R-NY-21]05/02/2019
Rep. King, Peter T. [R-NY-2]05/02/2019
Rep. Raskin, Jamie [D-MD-8]05/16/2019
Rep. Herrera Beutler, Jaime [R-WA-3]05/16/2019
Rep. Turner, Michael R. [R-OH-10]05/16/2019
Rep. Kinzinger, Adam [R-IL-16]05/16/2019
Rep. Schiff, Adam B. [D-CA-28]05/16/2019
Rep. Visclosky, Peter J. [D-IN-1]05/16/2019
Rep. Levin, Andy [D-MI-9]05/16/2019
Rep. Clay, Wm. Lacy [D-MO-1]05/16/2019
Rep. Krishnamoorthi, Raja [D-IL-8]05/16/2019
Rep. Soto, Darren [D-FL-9]05/16/2019
Rep. Takano, Mark [D-CA-41]05/16/2019
Rep. Finkenauer, Abby [D-IA-1]05/16/2019
Rep. Wild, Susan [D-PA-7]05/16/2019
Rep. Watson Coleman, Bonnie [D-NJ-12]05/16/2019
Rep. Brownley, Julia [D-CA-26]05/16/2019
Rep. Young, Don [R-AK-At Large]05/16/2019
Rep. DelBene, Suzan K. [D-WA-1]05/16/2019
Rep. Ruppersberger, C. A. Dutch [D-MD-2]05/16/2019
Rep. Womack, Steve [R-AR-3]05/16/2019
Rep. Rouda, Harley [D-CA-48]05/16/2019
Rep. Gabbard, Tulsi [D-HI-2]05/16/2019
Rep. Pingree, Chellie [D-ME-1]05/16/2019
Rep. Kuster, Ann M. [D-NH-2]05/28/2019
Rep. Stivers, Steve [R-OH-15]05/28/2019
Rep. Marshall, Roger W. [R-KS-1]05/28/2019
Rep. Wittman, Robert J. [R-VA-1]05/28/2019
Rep. Horn, Kendra S. [D-OK-5]05/28/2019
Rep. Maloney, Sean Patrick [D-NY-18]05/28/2019
Rep. Lowenthal, Alan S. [D-CA-47]05/28/2019
Rep. Lieu, Ted [D-CA-33]05/28/2019
Rep. Yarmuth, John A. [D-KY-3]05/28/2019
Rep. Katko, John [R-NY-24]05/28/2019
Rep. Johnson, Henry C. “Hank,” Jr. [D-GA-4]05/28/2019
Rep. Norton, Eleanor Holmes [D-DC-At Large]05/28/2019
Rep. Sherman, Brad [D-CA-30]05/28/2019
Rep. Dunn, Neal P. [R-FL-2]05/28/2019
Rep. Case, Ed [D-HI-1]05/28/2019
Rep. Gibbs, Bob [R-OH-7]05/28/2019
Rep. Lynch, Stephen F. [D-MA-8]06/14/2019
Rep. DeFazio, Peter A. [D-OR-4]06/14/2019
Rep. Lamb, Conor [D-PA-17]06/14/2019
Rep. Delgado, Antonio [D-NY-19]06/14/2019
Rep. Clarke, Yvette D. [D-NY-9]06/14/2019
Rep. Sensenbrenner, F. James, Jr. [R-WI-5]06/14/2019
Rep. Lofgren, Zoe [D-CA-19]06/14/2019
Rep. Perlmutter, Ed [D-CO-7]06/14/2019
Rep. Gottheimer, Josh [D-NJ-5]06/14/2019
Rep. Boyle, Brendan F. [D-PA-2]06/14/2019
Rep. Scanlon, Mary Gay [D-PA-5]06/14/2019
Rep. Wagner, Ann [R-MO-2]06/14/2019
Rep. Kirkpatrick, Ann [D-AZ-2]06/14/2019
Rep. Spano, Ross [R-FL-15]06/21/2019
Rep. McGovern, James P. [D-MA-2]06/21/2019
Rep. Schrier, Kim [D-WA-8]06/21/2019
Rep. Cox, TJ [D-CA-21]07/09/2019
Rep. Kilmer, Derek [D-WA-6]07/09/2019
Rep. Gonzalez, Anthony [R-OH-16]07/09/2019
Rep. Palazzo, Steven M. [R-MS-4]07/09/2019
Rep. Crow, Jason [D-CO-6]07/12/2019
Rep. Harris, Andy [R-MD-1]07/23/2019
Rep. Posey, Bill [R-FL-8]07/23/2019
Rep. Budd, Ted [R-NC-13]07/25/2019
Rep. Marchant, Kenny [R-TX-24]08/09/2019
Rep. Kim, Andy [D-NJ-3]08/09/2019
Rep. Joyce, David P. [R-OH-14]08/16/2019
Rep. Stewart, Chris [R-UT-2]09/11/2019
Rep. Davids, Sharice [D-KS-3]09/11/2019
Rep. Maloney, Carolyn B. [D-NY-12]09/11/2019
Rep. Rutherford, John H. [R-FL-4]09/12/2019
Rep. Velazquez, Nydia M. [D-NY-7]09/12/2019
Rep. Zeldin, Lee M. [R-NY-1]09/20/2019
Rep. Pocan, Mark [D-WI-2]09/20/2019
Rep. Gonzalez, Vicente [D-TX-15]09/20/2019
Rep. Keating, William R. [D-MA-9]09/20/2019
Rep. Loebsack, David [D-IA-2]09/20/2019
Rep. Fletcher, Lizzie [D-TX-7]09/27/2019
Rep. Hice, Jody B. [R-GA-10]09/27/2019
Rep. Meng, Grace [D-NY-6]09/27/2019
Rep. Payne, Donald M., Jr. [D-NJ-10]09/27/2019
Rep. Scott, Austin [R-GA-8]09/27/2019
Rep. Lawson, Al, Jr. [D-FL-5]09/27/2019
Rep. McCollum, Betty [D-MN-4]10/16/2019
Rep. Cisneros, Gilbert Ray, Jr. [D-CA-39]10/16/2019
Rep. Spanberger, Abigail Davis [D-VA-7]10/23/2019
Rep. Kind, Ron [D-WI-3]10/23/2019
Rep. Smucker, Lloyd [R-PA-11]10/23/2019
Rep. Sewell, Terri A. [D-AL-7]10/23/2019

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

Cosponsor

Date Cosponsored
Sen. Jones, Doug [D-AL]* (original cosponsor)09/25/2019
Sen. Cassidy, Bill [R-LA]* (original cosponsor)09/25/2019
Sen. Hassan, Margaret Wood [D-NH]* (original cosponsor)09/25/2019
Sen. Hyde-Smith, Cindy [R-MS]* (original cosponsor)09/25/2019
Sen. Rosen, Jacky [D-NV]* (original cosponsor)09/25/2019
Sen. Cramer, Kevin [R-ND]* (original cosponsor)09/25/2019
Sen. King, Angus S., Jr. [I-ME]* (original cosponsor)09/25/2019
Sen. Moran, Jerry [R-KS]10/16/2019
Sen. Sinema, Kyrsten [D-AZ]10/22/2019

Source:  S. 2546 – Safe Step Act: https://www.congress.gov/bill/116th-congress/senate-bill/2546/cosponsors

Support S. 2546/H.R. 2279 (Safe Step Act)
Please ask your legislators to cosponsor S. 2546/H.R. 2279 (Safe Step Act)!

Contact Information

Additional Information

Click or drag a file to this area to upload.
loading spinner

Mental Health Survey Results

These are the results of an anonymous questionnaire regarding mental health in the gastroparesis community.  The survey was open for a one-week period from September 25 to October 1, 2019, and was posted publicly on Facebook and Twitter as well as in our closed Gastroparesis Support Group (and several subgroups) and in our Gastroparesis: Fighting for Change advocacy groups.  We had 784 total respondents.

 

Please note that this survey is intended only to inform and should not be interpreted as scientifically proven data or as implying any sort of causation between mental and physical health.  Those of us conducting the survey are not researchers, and though we do our best to present and interpret findings, we seek primarily to spark interest in further research among those properly qualified to conduct it.  In addition, as a community, we wish to know more about our fellow community members, and these surveys give us an indication of the circumstances and difficulties others face.  In assessing the results, we find numerous limitations and shortcomings associated with this questionnaire, but we learn as we go and hope to conduct follow-up surveys to better enlighten us about the conditions in which this community finds itself.

 

Regarding the results, the first few charts show participants’ gender, age, annual income, general location, and number of years since being diagnosed.  Of those completing the survey, 95% of respondents (or 744) identified as female, and 41% fell into the 36-50 year old category.  67% had been diagnosed between 2-10 years, 21% for less than one year, and only 12% had been diagnosed more than 10 years ago.  Annual income varied greatly, with only 11% earning above $75,000 per year and 22% noting income of $10,000 per year or less.  68% indicated they reside in either urban or suburban areas (49% suburban; 19% urban) and 32% in rural areas.

 

When asked if they had ever been diagnosed with a mental health condition, 81% (or 629) responded that they had and another 6% (or 50) responded that, while they had not been given an official diagnosis, they believe they live with a mental health condition.  When asked about their specific mental health diagnoses (and permitted multiple responses), anxiety (77%) and depression (75%) were most commonly cited, followed by PTSD (40%).  Additional mental health conditions not included in the response options (but listed as “other” in written questionnaire responses) included eating disorders, borderline personality disorders, obsessive-compulsive disorders, ADHD, panic attacks/disorders, and several others.  [It is worth noting that, while not included in our chart presentation, 524 respondents (or approximately 67% of total respondents) cited more than one mental health diagnosis.  The most commonly cited combination was anxiety and depression, with 59% of total respondents (or 464) noting they had been diagnosed with both.]

 

Approximately 80% of total respondents indicated they either were currently being treated for a mental health condition (40%) or that they had been treated in the past (40%).  Another 8% responded that they had never been treated but believed they would benefit from treatment. When asked if they found treatment to be effective, 31% replied that they found treatment to be either highly (13%) or somewhat (18%) effective and 17% replied that they were either somewhat or completely dissatisfied with their treatment.  (For reasons we cannot fully understand, 52% selected “Does not apply” when asked this question.)  Of those who were currently receiving or had previously received treatment, only 22% indicated their therapist specialized in the treatment of chronic illnesses.  [While not included in our chart presentation, of the respondents receiving treatment from a therapist specializing in chronic illness, 90% noted that they were either highly (49%) or somewhat (41%) satisfied with their treatment.]

 

When asked about medications, 84% of total respondents indicated they were either currently taking medications specifically intended to improve their mental health status (56%) or that they had taken them in the past (28%) and 68% noted that these medications were either highly (23%) or somewhat (45%) effective.  When asked if they believed an approach which combined medications(s) with counseling would be helpful for most mental health conditions, 50% responded that, though they were not currently undergoing this type of treatment, they believed it would be helpful.  Another 34% indicated that this was either their current treatment approach or a previous approach and that it was highly (19%) or somewhat (15%) effective. 

 

In terms of current overall mental health, as self-assessed, 35% of total respondents rated their mental health as good, 17% rated it very good or excellent, and 48% rated it fair or poor.  When asked to self-assess quality of life, 67% responded that they were either not very satisfied (52%) or completely unsatisfied (15%), 26% were satisfied, and only 7% were either very (6%) or completely (1%) satisfied.  Of  the 784 total respondents, 628 (or 80%) who had been diagnosed with a mental health condition echoed these numbers, with 69% indicating they were either not very satisfied (53%) or completely unsatisfied (16%) with their quality of life.  (The quality of life ratings did not vary greatly from these figures regardless of the number of years respondents had been diagnosed: 67% of those diagnosed for 1 year or less were either not very satisfied or completely unsatisfied; 2-3 years = 67%; 4-5 years = 66%; 6-10 years = 64%, and 10 years or longer = 73% either not very satisfied or completely unsatisfied with their quality of life.)

 

When asked to whom they would first turn for help with a mental health condition, 67% responded that they would seek support from either a family member (47%) or friend (20%) and 15% indicated they would first seek help from a mental health professional.  Only 1% responded that they would first seek help from a crisis center or hotline.

 

Several respondents also submitted comments with their questionnaire, and we have included a sampling of those below.

 

As noted above, there are many limitations and shortcomings associated with this survey.  First and foremost, we wish we had asked respondents the estimated date of their mental health diagnoses.  It would have been interesting to note whether the physical diagnosis preceded the mental health diagnoses or vice versa.   We also wish some of the questions had been a bit clearer.  For instance, the question regarding income was designed to gauge household income, but because we failed to specify, we are not certain whether responses indicate individual or household income.  In addition, because our survey largely targets Facebook, we cannot assess those outside of social media.  Facebook limits accounts to those above 13 years of age as well, so we have very few if any respondents in that age category.

 

We would love to make further assessments as well.  We wonder whether and how age, location, and income have any bearing on the type and quality of treatment patients receive and on whether they have adequate access to this care.  We wonder what factors patients consider when evaluating the effectiveness of treatment, their overall mental health rating, and quality of life measures.  We would also like to know why patients value certain sources above others for help and support and whether that varies depending on the seriousness of the mental health condition or in the event of a true crisis.  We wish we better understood the connection between physical and mental health, if one exists, and would like to know details about the impact of one upon the other as experienced by patients, in their own words.  And, finally,  we would love to hear from patients as to what most needs to change in terms of how mental health is addressed and how we might go about implementing solutions to the problems this community faces.

 

We intend to pursue follow-up surveys, but our real hope lies in garnering the support of those scientists and physicians who might take an interest in this too-often-neglected gastroparesis community and reach out to us for further in-depth study regarding these matters.  We are grateful to all who participated and to all who take the time to review the survey results. 

 

Thank you!

Sample Survey Comments

Originally, I skeptically agreed with meeting with a chronic illness clinical psychologist to stop doctors from suggesting seeing one. I decided to continue seeing my psychologist on a regular basis to help cope with (the) negative impact gastroparesis and other health issues since have (had) on my quality of life. He has helped me deal with losing my career, missing family activities, being mostly homebound, preparing and handling surgeries, fears for future, speaking up for myself with “problematic” doctors, etc. I have not been diagnosed with any mental health issues; when asked, he states that I may have depressive moods/drops as a result of chronic illness stressors and debilitating symptoms (which is understandable) but am not clinically depressed.
My neurologist took me off all medicines for anxiety because he believes I don't actually have mental illness but that my poor quality of life due to my unmanaged chronic illness is why I am so anxious and depressed. I have lost my career and my family and am financially ruined. But I cannot afford therapy or really anymore doctor appointments. And the meds they are prescribing are out of reach or denied by insurance and still not addressing enough symptoms to get me back to work.
The chronic illness population is growing. We need more therapists who know how to help chronically ill patients learn to cope along with how to become resilient because of everything they must deal with.
I currently suffer from anxiety, depression, and bipolar disorder. Every day is a struggle. Getting help is a struggle due to my social phobia and anxiety. I wish getting help was easier somehow. It stresses me out.
Not enough mental health resources specifically geared to the GP community, unfortunately.
In the past, I have encountered a lot of therapists who seemed more interested in pushing pills on me than actually trying to understand and address the underlying causes of my depression and anxiety. Honestly most of the time they just made me feel worse than I started out feeling. They have little to no comprehension of the impact of a chronic illness on the individual and the people closest to them. They act like antidepressants are magical little happy pills that can fix everything but they are not! Sometimes I just need to cry and scream and just let it all out. I don’t want or expect anyone to fix anything or even really do anything. Just see me and be with me so I’m not so alone. It can get terrifying and overwhelming at times. And often, I just don’t want to be alone. I fear that I’m going to die, and I just want someone to help me to not feel so alone and scared. It’s not something that a pill can cure! And I often feel like I can’t really talk about it to anyone because it seems like everyone always wants to jump right to suicide and they don’t listen to what you’re actually saying! And it’s exhausting and frustrating!
I lost my job/insurance because of GP. This has a negative effect on my mental and physical health as well.
My GI doctor says that my problems are caused by all of the medications I'm on, a lot of which are for mental health. But I didn't get put on them until after my diagnosis. I just want to give up and stop taking all of my medicine. I don't know what to do!
This illness is so very hard on your mental health as well as the physical challenges you experience. You live in fear of what your body is going to do to torture you. You have anxiety when you’re dealing with anything to do with food, never knowing what or when you’ll be sick again and how long it will last. Social events cause anxiety and if you’re not able to attend, depression sets in… The disease is hard enough, dealing with doctors who don’t understand the disease and they treat you like it’s a mental health issue, when physically you’ve never felt worse in your life. We need more research and help from the medical community to keep us going with the best quality of life possible.
I have had all of my psychologists/psychiatrists/therapists/counselors tell me that it is absolutely understandable that occasionally I get suicidal thoughts because of my Gastroparesis. I have never and will never act on it. It’s just that there are times when my health is so poor that I feel like I’m a huge burden and good for nothing. I don’t take antidepressants because they cause indigestion and constipation and nausea and I already deal with that enough. I’d rather keep trying to manage my mental health with a therapist I see once sometimes twice a week. I understand that anxiety and depression can make the Gastroparesis worse but most of the time it stems from Gastroparesis so it is a vicious cycle. I don’t know where I would be if I didn’t talk to someone about it. That’s all I can do. Talk about it because there really is nothing that can be done to make it go away.
My symptoms of depression and anxiety have greatly increased since my digestive system issues have started. I also believe I’m dealing with PTSD from the years of suffering with symptoms, testing, and poor treatment by doctors/nurses.
I believe that the quality of life issues that people who have GP are not adequately addressed. I am daily devastated by the number of individuals I see on the Facebook GP page that express lack of hope, inability to cope, and their great frustration with the inadequate ability of the medical professionals in meeting their needs. I believe that overall we are not heard, our concerns are overlooked, and the quality of care for this disease is very poor. I hear frustration, dissatisfaction, resentment, and downright anger in the voices of those who suffer with this disease.
With gastroparesis I find that my mental health status changes with my symptoms. When I am flaring, I go from fine to suicidal very quickly because I am worried that I Will never come out of it.
I think there are special kinds of difficulties having chronic illnesses add in, hindering good mental health. It's hard to keep up with therapy and the like when you aren't consistently well enough to attend. Poor attendance leads to being removed as a patient.
My mental health was at its worst before I was diagnosed. I spent 6 years going from doctor to doctor, test to test before finding an answer. Once I got the diagnosis and was able to try and work to aid my symptoms, my mental health improved exponentially.
loading spinner

Gastroparesis Awareness Month 2019 – Symptoms and Management Survey

 

We wanted to share the results of the second survey Trisha Bundy conducted on behalf of our online #Gastroparesis community.

 

 

The survey consisted of 8 questions and was shared publicly on Facebook and Twitter as well as in our closed Gastroparesis Support Group and in our Gastroparesis: Fighting for Change advocacy groups. We had 534 total respondents.

 

Note that nearly 95% of respondents indicated they experience abdominal pain always, usually, or sometimes. Only 5% rarely or never experience pain. In addition, nearly 95% always, usually, or sometimes experience bloating/distention; about 91% always, usually, or sometimes experience nausea; and nearly 72% always, usually, or sometimes experience vomiting.

 

Beyond these options, fatigue was the most common symptom listed (nearly 95% of respondents), followed by dehydration (nearly 76%); malnutrition (just over 71%), and headaches or migraines (just over 67%).

 

When asked where they find beneficial information (multiple selections permitted), an overwhelming number of respondents (nearly 90%) cited Facebook. This is to be expected, as the survey was conducted largely on Facebook, of course. Online research was the next highest mentioned source (just over 73%). Again, since this was an online survey, that is to be expected. There was a major drop-off after these sources, with nonprofits being cited by slightly more than 44% of respondents. Doctors and nurses came in at an underwhelming (nearly) 36%. [Makes one wonder why this figure is not up there with the Facebook and online research numbers. Perhaps we might collect essays regarding this in future surveys.]

 

Slightly more than 47% of respondents indicated they felt their GI is doing the best she/he can to help, while only 15% noted their GI does not listen/dismisses their concerns. Nearly 6% indicated that, by choice, they do not see a GI. [Again, it might benefit us to dig deeper into these issues in future surveys.]

 

Finally, slightly more than 41% of respondents indicated they had not undergone surgeries — though it is not clear what portion of those respondents were offered procedures but declined or were not offered procedures they would have liked to have undergone. (These are common complaints we see in the groups.) Just over 32% had their gallbladders removed, though it is not clear if this surgery was pre or post-diagnosis. Nearly 33% of respondents have had or now have tubes or TPN as a source of nutrition.

 

We value and thank you for your participation in these surveys! We are new to this and are learning as we go, but we hope the results (while not quite scientific) are useful. We would love to hear your ideas for future surveys.

Thank you all so much!

 

#RealGP #CureGP

loading spinner

Gastroparesis Awareness Month 2019 – Statistics Survey

 

We wanted to share the results of a survey conducted on behalf of our online #Gastroparesis community by Trisha Bundy.

The survey consisted of 5 basic questions and was shared publicly on Facebook and Twitter as well as in our closed Gastroparesis Support Group and in our Gastroparesis: Fighting for Change advocacy groups. We had 598 total respondents.

Interesting to note that 56% of those responding are labeled idiopathic, meaning the cause of their Gastroparesis is unknown or has not yet been identified. We long for the day when we might all at least learn the cause of this illness. How can we speak of cures if we do not understand the origin?

 

loading spinner