Committed to Care for the Rare

Oct 11, 2018
At the NORD Rare Summit, Accredo will present important study findings, showing that Accredo’s holistic rare disease patient care yields a 27% increase in medication adherence.

Katie Article

The odds of having a rare disease are small – sometimes one in a million. Yet, one in 10 Americans are currently living with a rare disease. More than half of these patients are children.

Those living with a rare disease often face seemingly insurmountable challenges when it comes to receiving an accurate diagnosis, accessing appropriate treatment and identifying copay assistance and other financial sources for high-cost medications.

As the leading care provider to patients with rare diseases, Accredo will be joining others in the rare disease community at the NORD Rare Summit, hosted by the National Organization for Rare Disorders, Oct. 15-16, in Washington, D.C. We’ll be exploring the ways we can better serve patients and collaborating with others in the industry to drive advocacy.

Our Accredo Rare Disease and Gene Therapy Therapeutic Resource Center (TRC) team plays an important role as the industry leader in supporting rare disease populations, including guiding innovative support for novel therapies. In fact, Accredo is the exclusive specialty pharmacy for LuxturnaTM, the first in vivo gene replacement therapy approved in the U.S.

In addition, we are experts in patient access to life-changing and life-saving therapies, coordinating $575 million in copay assistance across Accredo for qualified patients last year.

Holistic Care Increases Adherence in Rare Disease Patients

At the NORD Rare Summit, Accredo is pleased to present important findings from a study we conducted among our population of Homozygous Familial Hypercholesterolemia (HoFH) patients, showing that Accredo’s holistic patient care yields a 27% increase in medication adherence.

It is estimated that 2,000 people in the U.S. are affected by HoFH, an inherited condition which can result in low-density lipoprotein cholesterol (LDL-C or “bad cholesterol”) levels over four times the normal range. This buildup of LDL-C results in aggressive atherosclerosis (narrowing and blocking of arteries). Untreated, heart attack and sudden death from cardiovascular disease can occur at an unusually young age.

For rare disease patients, medication adherence is critical, but is often complicated by medical, nutritional, social, or financial barriers. We learned from our study that more than half the patients reported a nutritional or medical barrier to care with the HoFH medication lomitapide during clinical assessment. After transitioning to Accredo’s high-touch care program, patient utilization of their lomitapide increased from 0.87 PUPM (per user per month) to 1.03 PUPM. This increase of 0.22 PUPM equates to a 27.2% increase in monthly utilization.

This high-touch care program included:

• Pre-treatment adherence education led by a nurse
• Pharmacist counseling and disease education
• Ongoing patient care outreach and care coordination
• Dietary management and consultation by a registered dietician

The study confirms the value of a multi-disciplinary case management approach to address drug, disease and nutrition-related barriers to care, increasing the potential for better health and safety outcomes on therapy.

Thinking “Big” and Acting “Small” for Rare Disease Patients

Our Rare Disease and Gene Therapy Therapeutic Resource Center (TRC) is a lifeline for rare disease patients, many with diseases that have limited treatment options. The Rare TRC, dedicated to some of the most rare, or ultra-orphan, conditions, cares for 4,000 patients who live with conditions across 12 therapeutic areas. Specialist pharmacists and nurses are on call 24/7 to educate patients about their medication and administration, discuss the potential for drug or food interactions, and help manage medication side effects. Specialized nurses, clinical dietary and nutrition support, social work, and reimbursement resources are available to help patients, their families, and prescribers navigate the unique complexities of rare disease therapies.

Our rare disease team thinks big to provide the highest level of care, deploying solutions such as video chat, texting and a full suite of support services where appropriate to meet patient needs. At the same time, our expertise allows us to act small through specialized, disease-focused teams that provide custom clinical solutions and personal patient service.

As we gather at the NORD Rare Summit, we’ll be joining others committed to care for rare populations, including those from the life sciences industry, pharmacies, patient advocacy groups, payers and research institutions. Together, we’ll be identifying ways we can optimize care and patient outcomes. Rare disease patients may be one in a million, but with Accredo on their side, they are not alone.

Author Bio

Gail Bridges
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