🚨🚨New podcast is LIVE!🚨🚨 Living with chronic illness doesn’t just impact your health - it hits your wallet too. In this episode, Sam and her husband Adam open up about the hidden (and not so hidden) financial strain that comes with chronic illness. From medical bills to lost work hours to the cost of special accommodations, the financial pressure can be relentless. If you’ve ever had to choose between rest and a paycheck, or wondered how ti make finances work when health keeps getting in the way, this one’s for you. Links to all platforms to watch and listen are in our bio! #gastroparesis #gastroparesisawareness #invisibleillness #chronicillness #newepisode #gpact #podcast #financialhealth #financialempowerment (fb)

Recently, the AGA released a draft guideline for management of gastroparesis. It was shared publicly and open for comment. If you'd like to see more and read the guidelines, info can be found here: https://gastro.org/news/agas-guideline-on-management-of-gastroparesis-open-for-public-comment/#msdynmkt_trackingcontext=462cb8e4-b411-4a35-8c06-5b6154650300 Many in the community and beyond have asked G-PACT's comments on the proposed guidelines. The board prepared a comment and we did submit them to the AGA, but for transparency, we are also sharing here. We shared the following: RE: Public Comment on AGA Clinical Practice Guideline on Management of Gastroparesis (2025) on behalf of G-PACT (Gastroparesis Patient Association for Cures and Treatments) We commend the AGA for its rigorous evidence review and structured use of the GRADE framework in the development of this updated guideline. However, after careful review, we wish to express several concerns on behalf of the gastroparesis patient community. 1. Inconsistent Messaging on Treatment Recommendations Several sections of the guidelines, including those addressing domperidone and gastric electrical stimulation, issue conditional recommendations against certain interventions, while simultaneously noting that these same treatments may benefit particular subsets of patients. This contradictory language creates confusion and may result in unintended consequences in clinical decision-making and insurance coverage. If treatments show potential benefit for some patients, we urge the panel to reframe these recommendations using more neutral language (e.g., "evidence currently inconclusive due to X, Y, Z") rather than discouraging their use outright. 2. Risk of a “One Size Fits All” Approach Despite the guideline’s stated intention to support individualized care through shared decision-making, the overarching tone leans toward universal discouragement of most available treatments. As gastroparesis presents and progresses differently in each patient, rigid recommendations that do not clearly define when or in whom a treatment may be appropriate risk narrowing clinical discretion. The treatment summary chart at the end of the guideline more appropriately reflects the nuance needed, and we encourage similar framing throughout the document. These recommendations are also not taking into account the many different causes for gastroparesis, (i.e. diabetic, post-infection, post-surgical, drug-induced, neurological, and idiopathic.) There are many more studies done on diabetic gastroparesis, but the largest subset of gastroparesis patients, those with idiopathic gastroparesis, are left out of many studies and are therefore reliant on medications, procedures, or implants that may not have been directly studied in this patient population group. The current approach to the way these guidelines are written leave us gravely concerned for patients and their access to treatments that may help them. 3. Omission of the Patient Perspective The absence of patient or patient advocate representation on the guideline development panel is notable and concerning. The lived experience of gastroparesis often involves balancing limited options against debilitating symptoms. For many, even modest relief—especially of nausea or vomiting—can be life-changing. Without integrating patient voices, the recommendations do not fully reflect the values and priorities of those directly affected. We strongly recommend that future guideline development processes include patients or advocates as panel members from the outset. 4. Implications for Access and Insurance Coverage Given the authoritative nature of AGA guidelines, we are concerned that language such as “suggest against” may be interpreted by payers as justification to deny coverage, despite acknowledgment within the guideline that certain treatments may be effective for individual patients. Clearer guidance is needed on when these therapies may be appropriate, and under what clinical circumstances a trial is warranted. We suggest explicitly calling out cases where “suggest against” should not preclude treatment if clinician judgment and patient preferences align. 5. Positive Aspects Worth Highlighting We support the guideline’s endorsement of the 4-hour gastric emptying scan over shorter protocols, and we appreciate the transparency of evidence summaries and decision frameworks. These components enhance both accuracy in diagnosis and clarity for clinicians. Conclusion While we recognize the limitations of existing evidence, we believe that guideline language must more consistently and authoritatively accept the lived expertise of the patient in the decision-making process, treating it as valid justification for treatment decisions as opposed to the current language that “suggests against” therapies when the potential for benefit is not overwhelmingly outweighed by known or likely harms. We respectfully ask that the final guideline revise its wording for clarity, consider rebalancing recommendations to support shared decision-making more explicitly, and incorporate patient perspectives meaningfully in both content and future processes. Sincerely, Samantha Sauer On behalf of the G-PACT Board of Directors www.g-pact.org (fb)