Second Opinion Option for IPF and Other Rare Disease Patients Now Part of Express Scripts and PinnacleCare Services

Second Opinion Option for IPF and Other Rare Disease Patients Now Part of Express Scripts and PinnacleCare Services

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.

One comment

  1. Sandra says:

    I am a reired occupational therapist—usually part of the pulmonary rehab team. Because of my profession I was diagnosed very late in the IPF process. Like many “medical background” people I frequently self-diagnosed my symptoms—not always accurately it turned out.
    About 5 years ago after a bout with breast cancer, I decided my growing shortness of breath and fatigue were due to breast

    cancer surgery and treatment and maybe a “ touch of COPD” which my mother had the final 10
    years of her life. As symptoms got gradually worse I kept living my normal life but applying more and more energy
    conservation equipment and techniques.
    In November 2017 I was diagnosed with right lower lobe pneumonia.
    Regular treatment wasn’t clearing it up so my primary physician sent me to a pulmonologist. After many, many tests including a lung biopsy, I was diagnosed with severe stage IPF. My lung function is in the 40% range. I was put on continuous 4 liters of oxygen because my oxygen saturation were falling into the low 70% with any activity.
    Like Kim I need to be conscious of my oxygen concentrator away from the house because the battery runs out after 4 hours and needs to be switched for a new one.
    I now need help with most tasks. I can still dress myself and walk the short distance from my favorite chair to the bathroom and back.
    Most of my time is spent reading, knitting, praying and talking once a day to my 3 kids and assorted grandkids.
    No more OT consults, gardening, cooking and cleaning, laundry.
    I am grateful that I don’t have any pain, just that frequent irritating cough. My husband (a retired social worker) has taken over all the things I used to do except the budget and bill paying. We’ve been married 43 years and always split the duties. It’s hard for me to accept putting all the burden on him, but he never complains.

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