A Rare Conditions Care Value (RCCV) program providing access to “second opinions” for patients with rare diseases like idiopathic pulmonary fibrosis (IPF) was recently launched by two U.S. health management companies, Express Scripts and Pinnacle Care.
Second Opinion, as the service is called, offers precisely that— another opinion regarding diagnosis and disease treatment from a specialist in the field, so that patients can assess their disease, and recommendations on most effective treatment protocols and symptom management strategies. This could be especially important in rare diseases, where a particular physician’s knowledge and experience can be limited.
Express Scripts provides pharmacy benefit management services. PinnacleCare is a private health advisory firm that offers personalized guidance and expert case review. Members whose plan enrolls in the RCCV program will have free access to the Second Opinion service. It is available through the company’s SafeGuardRx suite of solutions, a press release states.
People with rare diseases, according to estimates, wait an average of up to 7.6 years and visit seven different doctors before receiving a confirmed diagnosis.
“The years spent going to different doctors, getting myriad medical tests, managing paperwork and experimenting with numerous treatments is an ordeal for patients and their health, as well as for those who love and care for them,” Glen Stettin, MD, senior vice president of clinical, research and new solutions at Express Scripts, said in the release.
Often, a second opinion from an expert can help resolve clinical questions and bring emotional reassurance to patients struggling with a rare condition and its symptoms.
The Second Opinion service through the RCCV program is expected to help reduce the emotional, physical, and financial burden on patients. It addresses rare diseases like IPF, hemophilia, alpha-1 deficiency, acromegaly, Gaucher’s disease, Huntington’s disease, and hereditary angioedema.
Among Express Script’s clients, the proportion of patients with one of the rare conditions covered in the RCCV program have grown from 29 percent in 2014, to 41 percent in 2017.
“Rare disease trends are growing on all fronts – more patients, new drugs and higher costs,” said Miles J. Varn, MD, chief medical officer of PinnacleCare. “In order to provide affordable access to these newer therapies, we need to make sure that the diagnosis is correct, and that the pharmaceutical treatment plan is based upon expert best practices.”
More than 7,000 different rare diseases have been identified so far, and the number of Americans with a rare condition today is nearly the same as that of Americans with diabetes.
Of note, the price of medications for rare diseases has increased 54 percent in the last four years, and patient out-of-pocket costs for rare conditions averaged an annual $1,790 in 2017.
The RCCV program, apart from the Second Opinion service, also offers patient support by specialized clinical pharmacists and nurses, including one-to-one counseling and in-home nursing services, the release states.