#United States #Arlington #ALS Association #Qalsody #insurance denials

"We Are Undeniable": A Powerful New Initiative from the ALS Association

The ALS Association has launched a significant national initiative dubbed "We Are Undeniable" with a focus on assisting individuals living with Amyotrophic Lateral Sclerosis (ALS) tackle the persistent issue of insurance denials for essential treatments, medications, and care prescribed by their physicians. This campaign is particularly crucial, as many insurance companies impose restrictions that can delay or deny access to critical care, exacerbating the already challenging circumstances faced by ALS patients and their families.

At the heart of this campaign is an innovative tool known as the Undeniable Kit, which equips families with a comprehensive guide to constructing appeal letters. This resource is free and designed based on successful appeals previously achieved through the advocacy of the ALS Association's legal team. Families can access this essential tool at ALS.org/Undeniable.

Calaneet Balas, the president and CEO of the ALS Association, articulated the urgency of this cause, declaring, "Insurance companies are weaponizing time against people living with ALS. When someone is facing a fatal illness, a delay is a denial. Every week spent fighting an insurer is time families will never get back." The campaign aims to eradicate these unnecessary delays and ensure that when a doctor prescribes treatment, it is promptly delivered to the patient.

One compelling story comes from Kayla Gonzalez, a young mother of two living with SOD1-ALS, a rare genetic variant of the disease. After receiving Qalsody®, the first FDA-approved therapy for her condition, Kayla's treatment was abruptly denied by her new health insurance provider, merely labeled as "not medically necessary." With the help of the ALS Association, her family was able to overturn the decision, although they faced significant delays that put them under immense stress.

Treven Gonzalez, Kayla's husband, recounted the emotional turmoil of navigating the appeals process. "When Kayla's treatment was denied, I felt lost and overwhelmed. The ALS Association was our lifeline during the appeals process. They connected us with the right people and never stopped fighting for us. Their support helped restore access to a treatment that means hope for Kayla and our entire family."

Tragically, this struggle is not an isolated incident. According to The ALS Association's recent survey, which gathered insights from individuals living with ALS, nearly one-third reported having insurance claims denied. The most frequently denied claims involved coverage for medications, power wheelchairs, and in-home care. The lengthy appeals process often stretched over many months, with a substantial number of cases ultimately resulting in continued denials or only partial approvals, pushing families to bear significant out-of-pocket costs.

The ALS Association has investigated the coverage policies of 19 major insurance providers, revealing a concerning trend: almost all impose additional clinical requirements not mandated by the FDA. Alarmingly, about one-third of these insurers outright refuse to cover Qalsody, an FDA-approved medication, even labelling it as investigational. This not only undermines the integrity of medical prescriptions but also contributes to lost time crucial for ALS patients, where every moment is invaluable.

Melanie Lendnal, chief advocate of The ALS Association, stated, "People living with ALS should not have to fight for care their physicians have already prescribed. If a doctor prescribes it, you should get it, no excuses. We have won these fights one family at a time, and we will keep winning them, but no family should have to fight the same fight over and over again."

Immediate Support for Families Facing Denials

The "We Are Undeniable" campaign provides a range of resources aimed at helping families currently grappling with insurance denials. Some of the key features include:

• - The Undeniable Kit: A step-by-step guide that assists families in drafting effective appeal letters.
• - Guidance on the Appeals Process: Detailed information on what to expect and the requirements at each stage of an appeal.
• - Pro Bono Legal Assistance: Access to ALS Association's network of legal professionals for complex appeals.
• - Denial Reporting: An organized method for families to report their denial experiences, aiding the ALS Association in documenting the breadth of the problem.

Aiming for Systemic Change

Fundamentally, the "We Are Undeniable" campaign operates under a clear mantra: Approved Means Approved. The ALS Association is committed to advocating for systemic changes within the insurance sector to protect the rights of ALS patients. When a treatment is FDA-approved and prescribed by a specialist, insurers should not have the power to deny access.

For anyone living with ALS, caregivers, or healthcare professionals seeking more information, resources are readily available on ALS.org/Undeniable. The ALS Association's policy team, along with treating ALS clinicians and families affected by coverage denials, are available for interviews to further shed light on this critical issue.

About The ALS Association

Founded in 1985, The ALS Association remains the only national nonprofit organization dedicated to combating ALS across all fronts — research, treatment, and public policy advocacy. With a reach extending throughout the United States via over 100 Certified Treatment Centers and a network of over 220 clinics, the ALS Association stands as the largest global organization focused on ALS. Their commitment to advancing research and advocating for better public policy is unwavering, as they work tirelessly to serve families affected by this devastating disease. Learn more at als.org.