Jennifer Snow’s Post

I have rewritten this headline: "GPs concerned about penalties for not helping their patients" aka MAKE YOUR PATIENT YOUR FIRST CONCERN (not yourself!) It is time for doctors to be scared about NOT helping their trans patients, rather than prescribing for them. This article in the Sunday Post quotes excuses as to why these GPs feel able to NOT provide care, but here is GMC guidance on making your patient the first concern. ✅ "You must keep your professional knowledge and skills up to date" - if you don’t know how to care for trans patients then learn. ✅ "Listen to patients and work in partnership with them, supporting them to make informed decisions about their care" - listen to your trans patients, what they are asking for is very simple. ✅ "Work with colleagues in ways that best serve the interests of patients, being willing to lead or follow as circumstances require" - if a specialist asks you to follow on that care then you should have a very good reason to decline to do so. ✅ "Promptly provide (or arrange) suitable advice, investigation or treatment where necessary" - sticking them on a 7 year waiting list is not ‘prompt’. ✅ "You must treat patients fairly. You must not discriminate against them or allow your personal views to affect your relationship with them, or the treatment you provide or arrange" - dig deep, why are you denying care? ✅ "If patients are at risk because of inadequate premises, equipment or other resources, policies or systems, you should first protect patients and put the matter right if that’s possible" - specialist trans services are inadequate, you can help. ✅ "Prescribing unlicensed medicines may be necessary when there is no suitably licensed medicine that will meet the patient’s need" - do not hide behind ‘the medicines are unlicensed’, these are everyday medicines prescribed routinely. #GMC advice is clear and simple, and it applies to ALL doctors, and ALL patients, including your #Trans patients. https://lnkd.in/eEnZzpZD

HOT OFF THE PRESS! Read our recommendations for how #CMS the Centers for Medicare & Medicaid Services should consider the #orphandrug #exclusion and incorporate #patientperspectives on #value, #therapeuticalternatives and #unmetmedicalneed in the #IRA #drugpricenegotiation for the #2027MDPNP. The #Inflationreductionact #IRA is changing a lot for #raredisease #patients. Some, like the #Medicare #PartD redesign limiting #beneficiary out-of-pocket costs to $2,000 per year and allowing the costs to be spread out over the plan year through #smoothing mean more #patients can afford the therapies they need. For other aspects of the law, like the Medicare Drug Price Negotiation Program #MDPNP, the impact on #innovation and #drugavailability - and ultimately patient access to life-altering therapies - is much less clear. #patients, #caregivers, and #healthcareproviders have unique insights to inform the drug price negotiation and calculation of the #maximumfairprice #MFP, and these insights are particularly vital for #raredisease indications of the negotiated products given the scarcity of data and treatment guidelines. For instance, exactly which drugs #CMS considers as 'therapeutic alternatives' anchors the price calculation and has major impacts on the negotiated price. But, not all therapies may work equally well for a patient (or at different points or stages in the patient's disease trajectory), and factors like product formulation can significantly impact daily life for the patient and the whole family (think having to get up at 2am to take another medication dose, or having to carry a cooler in the car to maintain refrigeration between administrations, to name just two examples). In some cases, switching products can destabilize a patient or have long-term ramifications, for instance because of the risk of tumor resistance or anti-drug antibody development. As these examples (and many, many others) show, picking the right 'alternative' therapies is vital for the negotiation, but often much more difficult than it sounds, in particular for #rarediseases with more common #offlable use and fewer medical guidelines and #compendia to inform treatment choices. Patients, caregivers, and healthcare providers who live these realities every day clearly have a LOT to say about these issues, and many others that impact if, when, and how they access life-altering therapies - but they need guidance on which insights would be most important for the drug price negotiation and how this information will be used. We at #NORD the National Organization for Rare Disorders commend #CMS for prioritizing patient engagement in the 2026 MDPNP, and for the willingness to revamp the engagement activities for the 2027 MDPNP. Read our recommendations including proactive CMS engagement by therapeutic area BEFORE the drug list is published, major changes to the session format, and proposed standard questions: https://lnkd.in/ed3e8rgR

It's heartening to see the US government health programs taking steps to expand access to anti-obesity drugs for those who need them. Medicare and Medicaid have expanded their coverage of anti-obesity drugs for heart patients receiving them for additional medical conditions. This will meaningfully expand access for patients in the US government health programs. The Centers for Medicare and Medicaid Services have issued guidance to Medicare Part D plans stating that anti-obesity medications with FDA approval for an additional medically accepted indication, such as reducing the risk of major cardiovascular events, can be covered for that use. However, the programs are still prohibited from covering the drugs for the treatment of obesity alone. This is a much-needed change that could help many people with obesity and other conditions. Wegovy and a competing drug from Eli Lilly are both being studied in multiple new indications ranging from heart health to joint damage. In fact, earlier this month, the FDA expanded Wegovy's label to allow its use for the prevention of cardiovascular events. Let's hope this is a step towards even more progress in the fight against obesity and its related health

Kudos to the Centers for Medicare & Medicaid Services Drug Price Negotiation Program team for updates to their process for IPAY 2027 - it looks like they’ve heard from stakeholders and rather than those “patient listening sessions” they are going to develop much better patient-focused sessions, such as round table sessions or focus groups. I think this revised approach will be much more effective at both engaging patients, caregivers, and advocacy groups AND it will provide CMS with more useful insights for their negotiation efforts! Full May 3rd Guidance below: https://lnkd.in/gM5t9avc

The relentless price hikes on essential cancer medicines are placing an enormous financial burden on patients, particularly those from marginalized communities. Black and Latino patients are disproportionately affected, facing higher rates of certain cancers and greater difficulty affording their medications. This underscores the urgent need for policy interventions to rein in drug prices and ensure all patients have access to life-saving treatments. The mid-year price hikes by Big Pharma highlight the industry's prioritization of profits over patient welfare. With over 1,000 price increases on prescription drugs since the beginning of 2024, the need for further drug pricing reform is more urgent than ever. Addressing this crisis is crucial for economic fairness and health justice, especially in mitigating the disproportionate harm faced by Black and Latino communities.

This evening, all of us will be graced with August's rare super blue moon. However, the Alliance for Aging Research was graced with a blue moon late last week, when the Institute for Clinical and Economic Review (ICER)’s President and CEO, Sarah Emond, shared our concerns about whether the Centers for Medicare & Medicaid Services (CMS) will truly protect #Medicare beneficiaries against #PBM and payer UM tactics in upcoming Part D formularies. Here is what she said in her 8/16 STAT opinion: "As our attention now turns to implementation, we must ensure that there are no unintended consequences for patients, especially related to the choices health plans and pharmacy benefit managers will make regarding the formulary placement of the negotiated drugs. Price transparency has a dark underbelly — it exposes the sometimes-distortive impact of rebates on patient access. Now that health plans providing prescription drug coverage for seniors will no longer get rebates from the negotiated drugs, they may move those drugs to unfavorable tiers on their formulary. It is incumbent upon CMS to ensure that patient access to these drugs isn’t hampered by such actions. If the entire point of the Drug Price Negotiation Program was to ensure more affordable access to prescription drugs, CMS must be diligent about ensuring that is truly the case.” The Alliance has been raising these concerns since CMS Listening Sessions last fall and in two briefings with The Hill: 1) 12/13/23 Medicare Drug Price Negotiation, How to Ensure Access & Equity: https://lnkd.in/eJzWWE-v 2) 6/26/24 Medicare & Drug Pricing: Time to Think Differently: https://lnkd.in/efCv4K5v A June report from the Alliance for Aging Research and Manatt Health argues CMS has tools at its disposal to address unintended issues: ➡ Press release: https://lnkd.in/eKTVA_QT ➡ Full Report: "Patient Impact of the Inflation Reduction Act: Administrative Options to Address Changed Incentives for Formulary and Utilization Management" at https://lnkd.in/ey3wkE89 The experts at Manatt and Alliance’s public policy manager, Adina Lasser, argue that CMS could: 💡 Set general minimum standards for plans participating in Part D, including regulating which drugs are put on plans’ specialty tiers and improving the beneficiary appeals process. 💡 Disapprove plan designs that discourage beneficiary enrollment. 💡 The agency can also require adequate coverage for drugs needed by beneficiaries and has the power to regulate which drugs are put on a plan’s specialty tier. CMS has actuarial equivalence, or the power to ensure plans offer a benefit equal or better than the defined standard benefit. The next seasonal blue moon is expected in May 2027. Here's hoping it won't be that long before we're on the same page again. For now, we're enjoying the view! 🌕 #IRA #healthequity #BlueMoon

340B is another topic that gets me fired up. As a person who has been on the receiving end of mountain high medical bills from hospitals over many years of my life... I cannot wrap my head around this type of clear abuse of funds. Prior to Trikafta (CF gene modulator), when I was inpatient multiple times a year, my hospital bills looked like a high interest mortgage I could never pay down. One time while inpatient the collections department of my hospital called to harass me about my debt that they did not feel I was paying down enough. They were shocked when I wheeled myself down to their offices from the 6th floor attached to my IV pump and oxygen. I met with the financial counselor and asked her what exactly she would like me to do. She was shocked. I was not given any solutions that applied to my situation unfortunately due to the fact that even on disability I made too much to qualify for assistance. My credit and my self worth continued to tank. Meanwhile, many hospitals and their executive staff are getting rich on the backs of their most vulnerable patients. Do I think 340B should be abolished? No. I recognize that many entities need the money. Especially in rural or very impoverished communities. Do I expect that some of those profits should go back to charity care and patients that truly need the relief? Absolutely. The government loves to govern many programs... but this one simply does not have enough rules to ensure true transparency on how the money is being spent. That is why I support 340B Reform. I am incredibly proud of ADAP Advocacy and their work surrounding these issues. Credit is due to the researchers and authors of this important and timely report; Marcus J. Hopkins, Brandon M. Macsata and Jen Laws I am proud to serve on the ADAP Advocacy Committee and I have already learned so much in a short amount of time. HIV patients are very similar to CF patients in that our treatments have changed the trajectory of our lives, and due to those breakthroughs in science we are truly living. However, those same medications are extremely expensive. We must advocate for protecting this wonderful life of ours.

📣 “It is an offence under Section 51 of the Pharmaceutical Services Act to offer an incentive as an inducement for a beneficiary to receive a benefit from a particular provider. A person who commits such an offence is liable on conviction to a fine of up to $200,000 and/or six months imprisonment.” 📣 I hope this is news that once and for all shakes up these predatory practices of some pharmacies. Despite the fact that the College of Pharmacists of B.C. explicitly prohibits pharmacies from offering inducements on costs paid by PharmaCare, they have done little to pursue the many complaints and flagrant disregard for these rules for many years now. Andrea Woo has done an incredible job in recent times highlighting this issue. She reported earlier this year how prescription medications play an integral role in B.C.’s response to the drug crisis, with more than 24,000 people in the province receiving conventional medications for opioid use disorder, such as methadone and buprenorphine. They are the first line response by physicians to individuals struggling with substance use disorders. But is everyone who is prescribed getting their proper medications, are they still collecting because they are helping their health condition or is it because of the financial incentive? This isn’t a choice people should have to make. The kickbacks being offered to many individuals, has not only lead to increased healthcare costs, but compromised care quality, and a distorted patient-provider relationship with some pharmacies often incentivizing unnecessary or inappropriate prescriptions, further endangering patients. This exploitation highlighted the urgent need for stricter regulations and enforcement to protect vulnerable populations from such predatory practices. It's crucial to prioritize patient health and integrity over profit to build a system that truly serves everyone, especially the most vulnerable. #EthicalPharmacyPractices #HealthcareIntegrity

Good coverage today on the latest Nuffield Trust report on the health implications of #Brexit - which is well worth a read

"Financial toxicity" from high out-of-pocket costs is a major issue for cancer patients, causing both economic and emotional stress. The Inflation Reduction Act of 2022 addresses this by capping annual out-of-pocket spending on outpatient drugs at $2,000 for Medicare beneficiaries starting in 2025. This change will provide significant savings for those on high-cost medications, potentially benefiting millions of enrollees. However, it also raises questions about increased premiums and the overall structure of Medicare Part D. https://lnkd.in/gVQaDj3b