Swept under the rug and forgotten--that's how some of the Michigan victims of the fungal meningitis outbreak feel almost four years later.
A group of them gathered at Broadcast House in Southfield to share their ongoing nightmare and frustration. They’re part of a support group for victims and caregivers. Once strangers, they now lean on each other to cope with their “new normal.”
“At 52 years old, I had my life ripped out from underneath me, no mattress, no parachute, no nothing,” says Will Mazure, Jr., known as JR.
“It’s been a nightmare that hasn’t ended yet,” Victor Davis says. “I’m in pain, from my neck, all the way to my tailbone… it’s a constant pain."
Life changed forever for so many in 2012 when they received a steroid shot for back pain. Turns out, those shots, made by the New England Compounding Center in Massachusetts, were tainted with mold.
More than 750 people in 20 states got sick with fungal infections, including meningitis, 64 of them died. Michigan was among the hardest hit, with 254 people getting sick, and 19 dying.
Penny Laperriere’s husband Lyn died from fungal meningitis a month after getting his shot.
“During the time he was in the hospital, he was in excruciating pain… it was just horrific,”
JR spent 109 days in the hospital.
“I had three back surgeries to scrub the black mold off of my spine,” he says.
Physical and financial toll
The drug the victims took to fight the fungus was brutal.
"For six months, I went around with a tray because I threw up daily," explains Kathy Cooley.
And it was expensive...
“My copay was $5000 a month,” Tom Darin says. “I couldn’t afford it… My wife said ‘let’s stop at the funeral home and register now because we can’t pay 5 thousand dollars.’”
Thankfully, the drug maker Pfizer stepped in and helped cover the cost.
Today, years later, all the victims we talk to complain of short-term memory and concentration problems.
"I'm a deacon at my church. I have to study the bible, but my concentration is gone," Davis says.
"I used to love being in my four-wheeler and just talking off in the woods for hours myself, Pamela Kid told us. "I can't do that anymore, because my boyfriend's afraid I'll get lost and not remember where I'm at."
They also complain of a lack of energy, and pain. They also share something else... a feeling of being forgotten.
“We’ve all just been swept under the rug,” says Pamela Kidd. “We’re the FDA’s and the government’s dirty little secret.”
At Congressional hearings in 2012, it became clear the lack of oversight of compounding pharmacies by the FDA and Massachusetts Health Dept. contributed to the disaster. NECC’s “clean room” was anything but. The company had been cited before for problems, but continued to operate.
NECC owner Barry Cadden pleaded the fifth at those hearings. He and 13 others are charged criminally in the case, but they’ve yet to face trial. The case is finally expected to be heard starting in September.
Haven't seen a dime
Last year, a bankruptcy judge approved a more than $200 million dollar compensation fund to help the victims, and another reported $10 million settlement was reached in Michigan as well. But how much of that money will actually make it to the victims remains to be seen. Private insurance companies and Medicare have put liens on the money to recover some of what they spent paying for medical care. That doesn’t sit well with the victims, especially when it comes to Medicare.
“The government failed us... they failed us,” JR says.
“So there’s the FDA on one side, and then Medicare, also run by the government, and they want their money back,” says a very frustrated Kathy Cooley.
Pressure to waive liens
Earlier this year, Senators Debbie Stabenow and Gary Peters from Michigan sent a letter to the US Dept. of Health and Human Services, asking the agency to waive any Medicare liens attached to the compensation fund. A handful of other Senators had already done the same, saying “neither the federal nor state government were actively regulating and monitoring compounding companies, which allowed the NECC to continue making dangerous compounds.”
In response to both letters, HHS declined the drop the liens saying essentially it would not be consistent with agency policy.
Attorney Mark Lipton represents 92 victims. He and other attorneys are in negotiations with Medicare and private insurers right now.
“We’re looking at an agreement where Medicare’s share of the recovery is looking like it’s going to range from 10 to 25 percent of the recovery, so that’s lower than normal.
But Lipton expects private insurers will end up with a greater percentage. Once the negotiations are done, the victims should begin getting their payments.
“Everybody else gets a piece of the pie, we’re left with the dish… maybe and they want the dish too,” JR says.
For Pamela Kidd, who can’t work anymore… “I had 20 more years to work, I will never get that money back that I lost from working.”
They all told me that believe that when and if they do get paid, it won’t cover the out of pocket expenses they’ve incurred, let alone anything for their pain and suffering.
Victor Davis’ wife sums it up best…
“I’m just really looking for something that will take their pain away… that’s why my prayer is.”