At Uptiv, we believe that every patient deserves access to the best possible care and support on their health journey. Advocacy plays a crucial role in making this vision a reality. Through our partnership with the Infusion Access Foundation, we are proud to support initiatives that amplify the voices of patients and drive positive change in the healthcare system. By empowering patients to share their experiences and advocate for their needs, we help ensure that their stories lead to meaningful improvements in care and access to life-changing treatments.
Meet the Infusion Access Foundation
The Infusion Access Foundation (IAF) is a 501(c)(3) patient advocacy organization dedicated to ensuring that provider-administered therapies are accessible and effective for everyone who needs them. IAF team is committed to providing patients with the resources they need to live their fullest lives, supported by a vibrant community. Their primary focus is on expanding access to these therapies, as we all know that the right treatment at the right time can be life-changing.
On July 24th, 2024 IAF hosted its annual Hill Day in Washington, D.C., where 11 individuals living with chronic illnesses, along with their care partners, were invited to participate. Hill Days provide a unique opportunity for patients to meet with lawmakers and staff, sharing their personal experiences and concerns about issues that directly impact their lives. For those with chronic illnesses, it’s a chance to convey how navigating the healthcare system has affected them.
Uptiv Health was asked by IAF to participate in Hill Day with a patient of our choice. We were honored to be asked and immediately contacted Lucy who is a 16-year old patient of Uptiv Health. Lucy and her mom, Danielle, have been through a long and complex chronic journey despite Lucy’s age. They have witnessed first-hand the struggles and barriers our healthcare system can pose to chronic patients in need of specialized drugs. More about Lucy’s experience at Hill Day below, but first a quick primer on the three key pieces of legislation that IAF focused on during Hill Day this year.
1. Step Therapy (Safe Step Act)
Step therapy, often referred to as “fail first,” is a cost-containment strategy used by health plans. It requires patients to try one or more alternative treatments before the insurer will approve the originally prescribed medication. This often happens when a newer or more expensive drug is prescribed. The Safe Step Act aims to amend the Employee Retirement Income Security Act (ERISA), which governs employer-based health plans, to require an exception process for any medication step therapy protocol to help ensure that patients can safely and efficiently access treatment.
2. Copay Assistance (HELP Copays Act)
Many patients on infusion therapies rely on copay assistance programs offered by drug manufacturers or charitable foundations. Insurers, however, often employ copay accumulator or maximizer policies to limit the impact of this assistance on out-of-pocket expenses. As a result, patients may be surprised by unexpected bills, as the insurer does not count the copay assistance toward the deductible or out-of-pocket maximum. The HELP Copays Act (S.1375/H.R. 830) seeks to require federally-regulated health insurance plans to count third-party payments, financial assistance, and discounts toward a patient’s deductible, co-insurance, co-payment, or out-of-pocket maximum. This legislation would also close loopholes that allow employer health plans to deem certain covered drugs as non-essential, thereby excluding them from cost-sharing calculations.
3. Prior Authorization (Improving Seniors’ Timely Access to Care Act)
Prior authorization is a pre-approval requirement imposed by health insurers for certain healthcare services or treatments. The process, which determines whether a prescribed service is medically necessary, can cause significant delays in care. The Improving Seniors’ Timely Access to Care Act (S.4532/H.R. 8702) seeks to streamline and modernize the prior authorization process in Medicare Advantage plans, ensuring that patients receive timely treatment.
Advocacy in Action
During Hill Day, patient advocates not only learned about these critical pieces of legislation but also the power of sharing their personal stories. By discussing their experiences with prior authorizations, step therapy protocols, and copay assistance denials, they help highlight the real-world impact of these policies.
Here is what above-mentioned Uptiv Health’s patient, Lucy, and her mom, Danielle, had to share about their experience:
“Lucy and I were honored to be able to participate in the 2024 Infusion Access Foundation Hill Day experience! While we look forward to connecting with our representatives later this month, this unforgettable experience provided comprehensive training on current legislation, the processes necessary to update or add legislation, and how to effectively share our experiences with our representatives. It was incredible to learn about the extensive processes in place to secure constituent needs through an approved Act! Now that we have been trained on how to effectively create change, we are inspired to rally friends, family, and fellow patients, to share their stories and those of other health-compromised individuals to ensure positive health outcomes for our community! A major takeaway was that not only is it necessary to share our experiences to create positive changes, but to stay connected with them, and also extend our appreciation for their tremendous efforts when positive changes are achieved so they know their impact!”
Although security concerns due to international officials’ visit and related street protests in D.C. during the same week prevented the group from meeting directly with legislative offices, the patient advocates benefited from the insights of IAF’s D.C. government strategy partners and local patient advocacy experts. The IAF team led discussions, answered questions, and conducted a mock congressional visit to prepare advocates for future engagements. Looking ahead, the advocates will participate in IAF’s “Virtual Hill Days,” where they can meet with their representatives and staff from the comfort of their homes.
“Our commitment to supporting patients extends beyond providing innovative treatments—we are dedicated to advocating for the policies and practices that ensure these treatments are accessible to everyone who needs them. At Uptiv, we are honored to support the efforts of the Infusion Access Foundation and their incredible work in championing patient voices and driving real change.”
Torben Nielsen, CEO of Uptiv Health
If you’re interested in lending your voice or story to Infusion Access Foundation’s advocacy efforts, please reach out via their website and sign up for their Advocacy Action Alerts.
If you’re interested in learning more about the life-changing experience of receiving your infusions with Uptiv Health, contact us and see how we can help.
