Be Your Own Advocate – Paula’s Story

Paula McGinnis headshotWhen myasthenia gravis patient Paula McGinnis tried to purchase her asthma medication in November 2015, the prescription was denied. Although she’d been doing well on this medication for 3-1/2 years, her insurance company required her to do “step therapy,” which in her case meant trying two other less costly medications and failing on each before her current prescription could be filled. But Paula has been through the denial process before, and has learned not to give up.

Paula’s Story

Paula’s MG is not stable. Her muscle weakness is managed with IVIg treatments and other medication. She notes, “If my asthma is not controlled, then I get MG weakness including [in] the diaphragm.”  Paula adds, “I went through several inhalers when I first got asthma in 2008 and failed most of them. I know what road I’m headed down if I have to start changing my asthma medication.”

When a customer service representative told her, “I understand what you are going through,” she replied, “I’m sorry but you do not walk in my shoes, and if my asthma gets out of control and I go into an MG crisis it will be me on a ventilator, not you.”

This was not Paula’s first insurance denial. When her coverage changed three years ago, it took six months for her neurologist to successfully appeal a denial for IVIg. A year ago Medicare denied her CellCept prescription for MG; this time her doctor’s appeal was not successful. Then her Alvesco inhaler. Imagine her frustration.

Paula’s pulmonologist did not appeal, so she chose to be her own advocate. She found past records showing she had “failed” on the two asthma medications required by the insurance company’s step therapy. She sent the doctor’s documentation with a certified letter of appeal to her insurance company. The result?  “I received a letter yesterday. They reversed their decision and gave an authorization good until the end of 2016.” Paula explains, “I came from a background of years of working as a registered nurse, so being on the opposite side of healthcare has been one of the most difficult things for me to adjust to. The frustration and stress of dealing with denial for treatment does not help my MG.”

“Doctors have just have come to the conclusion that it’s easier to do what insurance wants rather than to fight for their patients. My perseverance has helped me become my own advocate against the healthcare system.”

About Step Therapy

MedicineNet.com describes step therapy as “The practice of beginning drug therapy for a medical condition with the most cost-effective and safest drug therapy and progressing to other more costly or risky therapy, only if necessary. The aims are to control costs and minimize risks.”  But AARDA (the American Autoimmune Related Disease Association) points out some pitfalls: “Step therapy can be an impediment to timely care and doesn’t align with what’s best for the patient.”

The Arthritis Foundation explains in its October 2014 Position Statement:

Step therapy or “fail first” is the practice by insurers of requiring patients to test use of a safe lower cost drug or service before permitting more expensive drugs or services. Step therapy is an established benefit management tool that is used by commercial carriers, self-insured employers, Medicare Advantage/Part D programs, and Medicaid.

When a patient changes insurers or a drug they are currently taking is moved to a non-preferred status patients may be put through the step therapy process again. Some step therapy protocols impose these requirements on stable patients.

The Arthritis Foundation offers these ideas for legislation that puts limits on these step therapy protocols, including:

  • Permit a prescriber to override the step therapy when patients are stable on a prescribed medication.
  • Permit a physician to override the step therapy if the physician expects the treatment to be ineffective based on the known relevant physical characteristics of the patient and the known characteristics of the drug regimen; will cause or will likely cause an adverse reaction by or physical harm to the patient; or is not in the best interest of the patient, based on medical necessity.
  • Require health insurance plans to incorporate step therapy approval and override processes in their preauthorization applications.
  • Prohibit insurers from requiring insured patients from having to fail a prescription medication more than once.
  • Limit any single step therapy protocol to a maximum of 60 days.
  • In circumstances where an insured is changing health insurance plans, the new plan may not require the patient to repeat step therapy when that person is already being treated for a medical condition by a prescription drug provided that the drug is appropriately prescribed and is considered safe and effective for the patient’s condition.
  • When a health insurance plan changes formulary design, the plan cannot limit or exclude coverage for a drug for an insured if the drug previously had been approved for coverage by the plan for a medical condition of the person and the plan’s prescribing provider continues to prescribe the drug for the medical condition.

Conquer MG Note

We all would like to keep health care costs from increasing. Step therapy may be an effective tool to help with this effort. However, if you’d like to learn more about step therapy concerns, here are some sources:

Summer 2016 Update: Pending Governor Rauner’s signature, the Illinois state government passed legislation that would subject step therapy to a plan’s appeal process. Also, if you change medical carriers, you won’t have to go through step therapy process all over again before getting a certain medical treatment approved.

Jan. 31: Nutrition @ Greater St. Louis Myasthenia Mtg

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You’re Invited!

The Greater St. Louis Area 

Myasthenia Gravis Support Group 

Sunday, January 31, 2016, 1pm to 3pm

Glendale City Hall

424 N. Sappington Rd., Kirkwood, MO 63122

Event is free; Light refreshments will be served

Although your MG antibodies may be beyond your control, many steps toward good health are within reach. Join us for the next meeting of the St. Louis Area Myasthenia Gravis Support Group. Experienced dietitian Danielle Glesne will discuss nutrition issues unique to MG patients. She’ll offer suggestions to ease medication side effects, and strategies for chewing and swallowing problems. Don’t miss these practical ideas to champion your own health!

SCHEDULE

  • 1:00 pm          Announcements
  • 1:15 pm          “Nutrition and MG” by Danielle Glesne RD, LD; Missouri Baptist Outpatient Dietitian
  • 2:15 pm          Group discussion

MGF of Illinois is excited to work with another MG patient group, MGA – Missouri and Kansas, to serve Illinois and Missouri MG patients in the greater St. Louis area. The January meeting is being hosted by MGF of Illinois. Call 800-888-6208 if you have questions.

And mark your calendars! MGA-Missouri and Kansas will host the next meeting on Saturday, April 16, 10am to noon at the same location.

GROUP CO-SPONSORS

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Calendar Club Fundraiser for MG

Myasthenia Gravis FundraiserCalendar Club…

…is an enjoyable end-of-year fundraiser. With four winners picked each month, plus a Grand Prize winner and Runner-Up picked at year end, you have 50 chances to win.

A donation of $12.00 per ticket or $50.00 for five tickets is appreciated. Just click the donate button, enter your name and address and we’ll fill out your tickets. Your ticket stubs will be returned to you.

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Four times a month we draw a ticket for a weekly $25.00 winner. At year end, we draw a $500 Grand Prize winner and a $100 Runner Up. Submit your entries by January 2016 to be eligible for every drawing.

It’s called “Calendar Club” because we pick winners every week throughout the year.

This could be your lucky year!

To Participate by Mail or Phone

If you prefer to participate by mail, send your check made payable to MGF of Illinois to:

Myasthenia Gravis Foundation of Illinois

275 N. York Street, Suite 401

Elmhurst, IL 60126

Or enter by calling the MGF of Illinois office at 800-888-6208 with your credit card information.

The proceeds from this fundraiser will help us reach 1,200 MG patients, family members and friends with vital MG information about treatments and everyday coping strategies. We value your support!