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Prescription drug battle: coping with high prices, coverage gaps

DETROIT – Imagine if you are suffering through a serious illness and you know there's a drug that can help, but the drug is very expensive and you're having trouble paying for the treatment.

Help Me Hank has found some critical coverage gaps that can affect patients, leaving them frustrated, confused and desperate.

Such is the case for Tina Barrios of Eastpointe. She was diagnosed with multiple sclerosis in 1999. For years, Barrios had been managing her illness to the best of her ability. She was going back to school to become a social worker and was married last June.

"I've had my ups and downs, sometimes looking at me you can't even tell," Barrios said. 

But in September, Barrios stepped into the shower and couldn't get out without assistance. An MRI showed lesions on her spine and her brain. Barrios' condition deteriorated quickly, and life changed dramatically for Barrios and her husband, Vince.

"It's frustrating. He has to drive me everywhere. It's hard for me to even cook a meal for my husband," she said, her voice choked with emotion.

Treatment Option, High Cost

Dr. Thomas Giancarlo of the Michigan Neurology Associates determined that a drug called Lemtrada would be the best option to help Barrios' condition. However, Lemtrada costs about $105,000. The treatment involves five doses over five days infused into the patient through an IV drip, like a low-dose chemotherapy.

Medicare would pay for 80 percent of the drug, but Barrios says Medicaid wouldn't pay the other 20 percent up front, so she was unable to start the treatment. By the time she contacted Help Me Hank, she had been fighting for almost five months to line up the payment that would enable her to get that treatment.

Giancarlo said the government, insurance companies, and drug companies aren't keeping up with the science.

It's ironic that the field has moved forward we have more to offer people and yet there are these policy and cost issues that remain unresolved," Giancarlo said. 

Giancarlo also said that this situation isn't unique.

" It isn't limited to this drug. There are a lot of different situations that are like this," he said.

Drug Company Response

Much of Barrios' frustration is aimed at the high cost of the drug.

"I'm pissed at the drug company because they don't look at the patients as people," she said. 

Help Me Hank contacted Lemdtrada's manufacturer, Genzyme. It said there are industry regulations that do not allow the company to subsidize drugs for patients covered by Medicare. Instead, it has staff dedicated to helping patients find the money from other sources -- such as non-profit groups.

The company released a statement, reading in part, "We're committed to helping all patients who are prescribed our treatments obtain access to them regardless of their ability to pay." (See full company statement below)

Barrios believe the system needs to be improved to better help patients.

"They have to look at it from a personal perspective. What if it was one of their family members?" she said. 

What Can You Do?

Giancarlo said getting the drug covered can be easier for patients with private insurance, but he'd still like to see drugs more readily available to patients in need.

"It would make perfect sense that Americans should have advantages that everyone else has in terms of making sure these drugs are priced fairly," he said 

There are some steps you can take to get the treatments your family might need someday.

  • Request an "exception" from your doctor.  By doing so, your doctor will ask your insurance company to reconsider their coverage based on medical necessity.
  • Find out if there is another, cheaper drug that may work for you.  There often are many generic, cheaper versions of drugs that are just as effective.  Do your research and see if these drugs apply to your illness.
  • Get it in writing.  File a letter of appeal with your insurance company so you have a written record of your claims.
  • Compare pharmacies. Sometimes pharmacies have different prices for the drug.  Online pharmacies especially may have discount prices of drugs. 
  • Patient assistance programs. There are many programs and non-profit organizations that exist in order to help patients in situations like Barrios.  Search online and see if you qualify for such a program.
  • Check with the state of Michigan: The state Department of Health and Human services says there is a program called MI Health Link for people over
  • 21 years old who are enrolled in both Medicare and Medicaid and live in the counties of Barry, Berrien, Branch, Calhoun, Cass, Kalamazoo, Macomb, St. Joseph, Van Buren, Wayne or any county in the Upper Peninsula. This program is designed to help coordinate coverage between the two programs.

Good News for Patient

As for Barrios, she finally received some good news. She says a non-profit group has come up with the money and she hopes to begin her treatments soon.

She wanted to share her story to call attention to the issue. Her greatest wish is to get back to school, become a social worker, and do more to help others.

"There has to be a voice for patients to go against these multi-million dollar companies because they have no voice," she said.

Complete Company Response

"We’re committed to helping all patients who are prescribed our treatments obtain access to them regardless of their ability to pay.  This includes a free drug program for qualifying patients lacking insurance coverage and, for non-government insured patients, this includes a copay assistance program.  We also refer patients to charitable foundations for additional assistance.  The delay for this patient involved the level of reimbursement made by Medicare and Medicaid to the healthcare facility that administers treatment, which has been resolved and the patient is being scheduled for treatment. We’ve been in regular communication with the patient through our support services program and have been diligently assisting the patient in exploring alternate options so that she could gain access to treatment as soon as possible."  -- Genzyme

Supporting Non-Profits

If you'd like to help patients caught in this coverage gap, you might consider researching and supporting some of the organizations that can help.

As always, you should do your research and make sure it's a charity that meets all your criteria for a quality organization. Giancarlo provided this list of organizations for your consideration.

  • Multiple Sclerosis of America
  • The Assistance Fund   
  • Healthwell Foundation
  • National Multiple Sclerosis Society
  • Patient Advocate Foundation