Monday, October 31, 2016

Anger, Frustration Grow as Victims Wait

By Walter F. Roche Jr.

Though miles apart Jack Pavlekovich and Joan Peay have some experiences in common, experiences they both wish they never had.
Pavlekovich in Indiana and Peay in Tennessee were injected with a fungus loaded spinal steroid from the same rogue drug compounder. They both contracted fungal meningitis, underwent lengthy hospitalizations and debilitating treatment with powerful antifungal drugs.
And then they both got to go through it all over again after suffering lengthy and painful relapses.
Then, there's one other thing: Four years after it all began they, like nearly all other victims of the country's worst such outbreak in history, have yet to receive a penny in recompense even though well over $200 million has been amassed to pay back creditors and victims of that Massachusetts drug compounding firm,  the New England Compounding Center.
An additional $40 million has been set aside from a federal crime victims fund, but outbreak victims are learning that it may be months before they can expect to get anything from that allotment and even then there will be strings attached, strings that could force them to pay some or all of the money back.
"First we were promised payment in early 2015," said Pavlekovitch, "then it was March of 2015. Then it was March of 2016, then July, then August. It's October and still nothing."
 Peay, who was back in the hospital with a relapse a year after her original 2012 bout, says she is "ashamed" of the federal officials who added to the ongoing delays by, among other things, refusing to waive reimbursements to the Medicare program for the costs of treating victims.
"Some victims had to declare bankruptcy during these four years," Peay added.
One of those was Pavlekovitch, who said he had no choice but to declare bankruptcy as the copays and other uncovered expenses drained the family resources.
Four years ago today he was released from the hospital after his first bout on Oct. 31, 2012, but was back the next day with a blood clot.
Both Peay and Pavlekovich describe in excruciating details the painful and overwhelming after effects of the anitfungal drugs they were treated with. Hallucinations, pneumonia, loss of memory,, hearing loss.
"There were many times that month I thought I would die and didn't care, because I knew I'd be in a better place if I did," Peay said of her treatment for the 2013 relapse.
Peay and Pavlekov
ich aren't the only outbreak victims angered and frustrated over the delays.
Another Tennessee victim said he has been waiting weeks for a form that must be filled out before a promised payment can be made.
"We are so overwhelmed with debt that we'll never recover," said Jona Angst, a Michigan victim, adding that retirement and savings accounts "are gone."
"We keep being told it's coming but its the end of October and still nothing. It's shameful. Just nothing. It's a disgrace."
"Here it is the end of October and less than one percent of the victims have received a check," said Kathy Pugh, who actively campaigned for the $40 million that is now apparently logjammed. Pugh's mother was a Michigan victim of the outbreak.
Terri Lacey, who has served as a volunteer, troubleshooter and counselor to dozens of victims, said  that those victims are now faced with watching the little they can recover being eaten away.
"Unresolved litigation has resulted in the transfer of precious dwindling resources for recovery into the pockets of legal teams rather than patients.  What little funds might make their way to patients have been reclaimed by Medicare and insurance companies.  Patients will be left with little or nothing," she said.


  1. Where's the news agencies at to let Americans know what are government and greedy lawyer's are doing to victim's

  2. They dont car about us they never have all of the promices and hurry up and wait has ruined all of us being a victim of this is bad enough but all of he lies and literally only get pennies when he lawyers got millions is heart breaking my life is worth more than pennies i cant go to the doctors when my head hurts so bad i cant breath migrantes are nothing compared to the headaches i was left with and forgetting what you are saying mid sentence is so embarrassing i forget things i should know and get mad because i cant for the life of me remember if i have asked my kids how their day was at school no insted i ask them 12 times because i cant remeber what hey have told me 11 other times ughhhhhhhhhh im pissed they did this to me i use to work with numbers i cant remember a phone number now when will this nightmare end Sorry for the Rant

  3. These are not rants, they are the same emotions we are all going through! Mid sentence lapses, I also worked(worked) with, numbers, programming, etc. Now I color, on the days my pain in under control.
    I also have lost everything, including my self respect, I am so far in debt, lost my home, have had to continu to diwn in standard or living, I boggles my mind, I also have wondered about, had I not survived, my hospital stay, my doctor says I should consider, seeking ptsd evaluation,( told him unless everything was free to count me out).
    Near homeless now, have thought about the go fund me stuff, but I could sell golf balls on street corner, except I can't stand, walk, long enough, and I would forget why I was their.
    Thank you
    Do you suppose the owners of necc are suffering.
    My attorney has done nothing but wait for his cut.
    No one wants to make national issue, because of the amount of federal and local, government lack of responsibility, I mean we did have the start of obama care, or national health care. No reason for anyone to seek rembursment, everyone was paid through some source or other. Thousands of people daily use Medicare, and never pay back, or even ask to. What happened to our president and his world wide compassion ?

    1. Mr. Roche,
      My husband,Daniel Lindenberg, was diagnosed with black mold meningitis in October of 2012. He lost his 4 year battle on March 7 of this year. He was diagnosed with a relapse in December of 2015. I didn't think I would lose him in just a few short months.Danny died just a few weeks shy of his 49th birthday. He was taken from me much too soon. Then again, forever wouldn't have been long enough. I loved my Danny so. I lost my mom in January, so I have had a double whammy in just 2 short months. I keep pushing forward. It is what my Danny would want me to do. I stay strong for him. At least I know he is in a better place and no longer suffering the horrible things that he had to deal with. His last four years on this earth were full of suffering and pain. It was excruciating for me to watch.The owners of NECC killed my Danny slowly over a 4 year period. Four long years of suffering, but my Danny kept his sense of humor through it all.I miss my Danny with every beat of my heart. I dread the holiday season, but my grandbabies will keep me going. The 4 year anniversary has come and gone, and still no financial relief for those dealing with the aftermath of the irresponsible actions of the owners of NECC. I'm sure their Christmas season won't be affected by their selfish actions. Not so for the victims. The Christmas season is especially hard due to the financial hardships we all face? But we don't forget the true meaning of Christmas: love. So, treasure your loved ones and do not take them for granted. This year has taught me that no one knows what tomorrow will bring to them. I know I wasn't when I walked into my living room at 8:00 in the morning to find my Danny gone. My world forever changed.