The work of the National Consumers League is making a difference in people’s lives across the country. Meet some of the consumers touched by our programs.
Read about NCL’s impact
Preventing yet another victim
Paige, 55, a Nashville wife and mother of two, answered an employment ad for secret shoppers. Before sending payment to the scammers, she reached out to NCL.
Read about NCL’s impact
Building a stronger generation
A grease fire flared up in Decklan’s kitchen. As his family scrambled and panicked, fearing that the whole house might erupt in flames, Decklan remained calm. He hurried over to the pantry, grabbed some baking soda, and dumped it on the fire quickly extinguishing the blaze.
Read about NCL’s impact
Script Your Future saved my life
Cincinnati resident Charles, 45, lost his computer business — and health insurance— during a time of economic downturn. A diabetic, Charles was now unable to afford his medication. He stopped taking it which made him seriously ill and put his life at risk.
Read about NCL’s impact
For a safer workplace
Jeremy is a fast-food worker who has been employed at a number of Chipotle restaurants in New York City. When he was just 20 years old, he took part in an NCL research project that revealed that management practices within the fast food chain were putting workers—and food safety for customers—at risk.
Read about NCL’s impact
Member Spotlight: Infusion Access Foundation
Q: How long have you been at the Infusion Access Foundation and what do you love most about your role there?
A: I just had a handful of people, including my retired uncle, message me on LinkedIn saying, “congrats on your work anniversary!” so I know the answer to this – two years and two months!
I’ve always been someone who sticks up for “the little guy.” Whether that was a classmate or the underdog of two competing teams, I always knew who I was rooting for. In the context of the American healthcare system, there are two huge giants battling it out– insurance groups and pharmaceutical companies. “The little guy” is the patient. The person who has just been given a life-changing diagnosis and is now expected to navigate the convoluted maze that is our healthcare system. I think what I love most about my role is that my job is to stick up for patients, whether that’s on the state- or federal-level advocating for laws that would improve patient access, affordability, and equity or on the insurance payor side advocating for insurance coverage. I never want anyone managing a chronic or autoimmune disease to feel alone or like they have no one to turn to, and I love that IAF allows me to be there for those individuals and advocate on their behalf.
Q: What are the biggest issues that infusion patients face in receiving treatment and being able to adhere to their treatment plans?
A: Having a chronic illness or autoimmune condition is a full time job, but unfortunately, not a paying one. Patients are not only taking on the cost burden of managing their conditions, but they are also taking on the administrative burden of navigating our healthcare system. I wish I could say that as soon as your doctor prescribes a treatment, you are able to receive that treatment, and your insurance will cover all or most of the cost. But, that’s not the case. Patients are constantly jumping through hoops to access their prescribed medications, from step therapy protocols that require patients to try and fail an alternative treatment before they can take the one their doctor recommended to mid-year coverage changes, where an insurer can suddenly decide that they will no longer cover your medication halfway through your plan’s coverage year. From what I’ve heard from infusion patients, it’s the constant battle to afford and access their medications that prevents adherence. It’s also just hard to do it all. We all live busy lives, and managing a chronic illness is no small task.
Q: What policy issues has IAF been prioritizing to advocate for infusion patients?
A: IAF advocates for policies that will improve patient access, equity, and affordability. It is our job to look out for threats to these priorities. Whether that’s through talking to patients or monitoring new insurance or legislative policies. As I mentioned previously, two of the biggest threats to patient access, include step therapy and non-medical switching. The former refers to an insurance tactic known as “fail first” that requires patients to try and fail a medication before being allowed to take the medication they were originally prescribed. We aren’t talking about Prime Wardrobe; this is not your harmless try-on-at-home-and-return-if-it-doesn’t-fit deal. We are talking about someone who is experiencing real symptoms from a chronic disease being expected to try a medication their doctor did not prescribe, “prove” that it doesn’t work for them by getting sicker or watching their condition worsen, and only then will their insurance company allow them to take the medication prescribed by their physician.
The latter threat- non-medical switching- is another insurance practice that forces patients to switch medications for “non-medical” reasons. IAF has heard from patients who have been stable on their medication for years and suddenly, in the middle of their plan year, their insurance company mandates that they switch to a different medication. As you can imagine, these patients were scared of what that change would mean to their disease, quality of life, well-being, and employment. They didn’t want to switch from something that was keeping their disease stable for a reason unrelated to their health. This is an insurance company playing doctor. Putting aside the medical concerns, it is completely unacceptable in every other industry to change a contract in the middle of its term, yet insurance companies are allowed to change the conditions of their contracts with patients by either raising the cost responsibility or removing a medication from their formulary entirely (a drug formulary is the list of drugs an insurer will cover).
In regards to patient affordability, IAF has supported federal and state legislation that will shine a light on pharmacy benefit managers (PBMs) and bring greater transparency to the practices of these drug middlemen. Although PBMs market themselves as necessary negotiators serving as a liaison between drug manufacturers and insurance companies, it’s pretty clear where their allegiances lie when you discover that most are owned by major insurance companies. The way the system currently works is that drug manufacturers offer PBMs rebates in exchange for placement on an insurance company’s formulary. PBMs often will pocket these rebates and fail to pass the savings on to patients. PBMs are also much more likely to select higher cost drugs which equate to bigger rebates for them.
Making sure patients can take advantage of cost assistance is another top priority for us. Many infusion or injectable patients rely on copay cards or third-party assistance to afford their medications. These cards typically look like your standard debit card and can be used at your infusion office or a pharmacy counter. Oftentimes, these cards are distributed by a drug’s manufacturer, but it can also come from a third-party charity. Regardless, it is real money that a patient can use to bring down the cost of their medication. Insurers are not a fan of these cards or copay assistance in general. Patients can better afford their medications when they have external assistance, and they can also reach their deductibles or out-of-pocket maximums faster. This requires insurance companies to pick up the bill faster. As you can imagine, insurers don’t like this. So in response, insurers have implemented “copay accumulator programs” or “copay maximizer programs.”These programs limit how much third party cost assistance counts towards a patient’s out-of-pocket expenses. IAF is working to ban these programs in all 50 states and federally.
Lastly, IAF is acutely aware that the structural inequities in our country mean that different groups of people experience disease management differently. Whether that’s due to unconscious bias at the doctor’s office due to the color of your skin or one’s proximity to the closest infusion center. We know that not everyone has the same opportunity to achieve optimal health. Therefore, addressing health disparities in the infusion community is a top priority for the IAF team. We hope that by listening to patient advocates and different community leaders, we can better understand the needs of certain patients and meet these individuals where they are.
Q: How does IAF plan to continue engaging with patients to inform its policy and advocacy work going forward?
A: As 2022 comes to a close, we have been asking ourselves–how can we improve in 2023? We know that all of the policy issues I just mentioned are likely to remain relevant for quite some time. However, it’s important to have consistent “check ins” with the patient community, making sure that the things we are advocating for are actually important to patients. That’s been the main driving force behind our most recent focus group project. We are currently in the midst of meeting with several groups of infusion patients and learning about their experiences navigating the healthcare system and receiving infusion treatments. We hope these conversations will inform our advocacy and overall strategy for 2023 and beyond. We have also recruited patient advocates across disease states and diverse backgrounds to be members of the new IAF Stakeholder Advisory Council (IAF STAC). IAF STAC will serve as a collective of individuals affected by and invested in affordable access to infusion and injection medications. This group will work with and advise IAF staff on mission-critical programs to ensure that all of IAF’s offerings are appropriate, timely, patient-driven, and representative of the needs of a diverse patient population. We hope 2023 will be our most impactful year yet.