By Jonathan Male
Several recent initiatives are aimed at advancing more equitable care for individuals and communities who are underserved.
However, rare disease is an area where people are very often overlooked or misunderstood. Many of us want to change that picture.
Achieving Health Equity in Healthcare
Relating to cancer in particular, one effort geared to ushering in more equitable care is the Alliance for Equity in Cancer Care, which is supported by The Merck Foundation with a commitment of $20 million dollars through 2026.
The alliance is a national, multi-site initiative that “aims to advance health equity by improving timely access to high-quality, culturally responsive cancer care for patients from underserved communities.”
Focusing on uncommon and underserved medical conditions, the Sanofi Rare Disease franchise is committed to improving the lives of patients with rare diseases by offering sustainable, transformative healthcare options.
In fact, lysosomal storage disorders (LSDs)—rare genetic conditions caused by enzyme deficiencies—are a keystone of Sanofi’s business, and the medical area for which it is most well-known.
Over the past four decades, Sanofi has developed therapies for the treatment of many rare diseases. Its initial area of focus was Gaucher disease and, in the past 20 years, Sanofi has expanded its focus to Fabry disease, Pompe disease, Mucopolysaccharidosis I, and acid sphingomyelinase deficiency.
Regarding health equity for patients with rare diseases, Peter Saltonstall, president and CEO of the National Organization for Rare Disorders (NORD), puts it this way:
“Achieving health equity is even more difficult for rare patients. To have equity in health means everyone has an opportunity to be as healthy as possible, regardless of social, geographic, economic or other obstacles that may be working against them.”
Rare diseases aren’t truly rare, as one in 10 Americans are living with a rare disease. In fact, there are 7,000 different types of rare disorders affecting 300 million people around the world, with more diseases being diagnosed each day.
REALITYRx: Experienced in the Rare Disease Space
We at REALITYRx have extensive experience working on rare diseases and novel drugs. In fact, we’ve worked to develop many types of patient and caregiver communications, from scientific videos, to diagnostic support for physicians, to pediatric information kits engaging for both parents and pediatric patients with these rare diseases. Our experience in pediatric rare diseases includes work on Duchenne muscular dystrophy (DMD), CF hemophilia, and more.
We’ve also created campaigns in other rare disease categories, including Hereditary Angioedema, Pulmonary Arterial Hypertension and Fabry disease.
Our background includes a broad range of communication solutions in a variety of therapeutic categories—from integrated creative campaigns (core vis aid, iPad vis aid, website, patient kits, and more) in support of Saol Therapeutics WinRho® SDF to digital gamification for Genzyme to raise awareness and diagnosis of Pompe disease.
Additionally, REALITYRx developed a full web campaign, from corporate site to trial promotion, for Catalyst to support their breakthrough therapy in LEMS (Lambert-Eaton Myasthenic Syndrome) and MUSK (Myasthenia gravis).
Important in the rare disease space is understanding patients, their communities and their unique needs.
Bottom line: REALITYRx has a unique understanding of how to reach patients and physicians with critical communications that can help save lives.
For more information, please contact Bob Karczewski ([email protected]) or Hoon Chang ([email protected]).
