Give Gregg a Fighting Chance Against CIDP
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Background
Our fight began in 2013, when Gregg was diagnosed with Guillain-Barre Syndrome. He was admitted to the ICU because he was in excruciating pain, he couldn't walk, and he had trouble swallowing. We were given the diagnosis of GBS. We later learned that while he had the rapid acute onset that is characteristic of GBS , he actually had the chronic version of GBS: chronic inflammatory demyelinating polyneuropathy, or CIDP.
Over the past five years, we've discovered that Gregg responds well to intravenous immunoglobulins (IVIG). But it's expensive and difficult to get. When he gets his medication, he's himself. He can work, he's an active and loving father to our twin children, and he's a good person to be around. When he's not getting his medication and he relapses, he is exhausted, riddled with pain, and loses all interest in life.
The medical system in America is not an easy one to understand. Our lives are now dominated by insurance companies, neurologists, pharmacies, and nursing companies. We have been told that he will need IVIG for the rest of his life. He had surgery for a port in November 2018 to make his infusions easier.
We resigned ourselves to meeting our out of pocket maximum every year because of how expensive his IVIG is , but we were not prepared for the insurance companies and pharmacies to prevent his treatment with red tape, delaying authorization approvals, and miscommunication with stakeholders (intentionally or otherwise).
Current Situation
Most recently, his insurance company and specialty pharmacy delayed his treatment so that his health has deteriorated. His insurance company would only approve his IVIG for 6 weeks at a time, rather than the year that his neurologist requested. Over the past year with that insurance company and pharmacy, every single reauthorization request had been delayed significantly, usually by two to four weeks. He had a case manager and a medical advocate, but they weren't very effective.
His last nerve conductivity test showed signed of worsening. Yet we were still hopeful that we could get the pharmacy, the insurance company, and the nursing company all working together so that he could get his IVIG every two weeks. We were wrong.
His last IVIG treatment was on 12/31/18. He had been trying since 12/20 to be proactive and get his treatment scheduled for the new year, but once again, insurance delayed his treatment. It was at this point, his company decided to let him go.
As we are in Texas and are a right to work state, they did not need to give him a reason for termination: it just happened. But we could read between the lines.
Currently, the entire family is my insurance and I am trying to keep the family afloat with my teacher's salary. The good news is that his new case manager is very helpful and proactive. His IVIG has been approved by both the new insurance company and the pharmacy, which is a feat in of itself. The problem is that the pharmacy is demanding that we pay for the IVIG before they ship it to us. The amount? $6,600. After 5 years of medical bills, we no longer have any emergency funds.
We are desperately trying to get Gregg his IVIG so that he doesn't deteriorate any further and so that he can find a new job.
How You Can Help
We are asking for help with paying for Gregg's current IVIG treatment, previous medical bills, and the start of his new deductible for when he does find a job. He's looking at paying three deductibles this year. The good news is that our out of pocket maximum is $6,500, so once we pay for this first treatment, we can focus on paying off past medical bills and saving for future medical expenses.
Our fight began in 2013, when Gregg was diagnosed with Guillain-Barre Syndrome. He was admitted to the ICU because he was in excruciating pain, he couldn't walk, and he had trouble swallowing. We were given the diagnosis of GBS. We later learned that while he had the rapid acute onset that is characteristic of GBS , he actually had the chronic version of GBS: chronic inflammatory demyelinating polyneuropathy, or CIDP.
Over the past five years, we've discovered that Gregg responds well to intravenous immunoglobulins (IVIG). But it's expensive and difficult to get. When he gets his medication, he's himself. He can work, he's an active and loving father to our twin children, and he's a good person to be around. When he's not getting his medication and he relapses, he is exhausted, riddled with pain, and loses all interest in life.
The medical system in America is not an easy one to understand. Our lives are now dominated by insurance companies, neurologists, pharmacies, and nursing companies. We have been told that he will need IVIG for the rest of his life. He had surgery for a port in November 2018 to make his infusions easier.
We resigned ourselves to meeting our out of pocket maximum every year because of how expensive his IVIG is , but we were not prepared for the insurance companies and pharmacies to prevent his treatment with red tape, delaying authorization approvals, and miscommunication with stakeholders (intentionally or otherwise).
Current Situation
Most recently, his insurance company and specialty pharmacy delayed his treatment so that his health has deteriorated. His insurance company would only approve his IVIG for 6 weeks at a time, rather than the year that his neurologist requested. Over the past year with that insurance company and pharmacy, every single reauthorization request had been delayed significantly, usually by two to four weeks. He had a case manager and a medical advocate, but they weren't very effective.
His last nerve conductivity test showed signed of worsening. Yet we were still hopeful that we could get the pharmacy, the insurance company, and the nursing company all working together so that he could get his IVIG every two weeks. We were wrong.
His last IVIG treatment was on 12/31/18. He had been trying since 12/20 to be proactive and get his treatment scheduled for the new year, but once again, insurance delayed his treatment. It was at this point, his company decided to let him go.
As we are in Texas and are a right to work state, they did not need to give him a reason for termination: it just happened. But we could read between the lines.
Currently, the entire family is my insurance and I am trying to keep the family afloat with my teacher's salary. The good news is that his new case manager is very helpful and proactive. His IVIG has been approved by both the new insurance company and the pharmacy, which is a feat in of itself. The problem is that the pharmacy is demanding that we pay for the IVIG before they ship it to us. The amount? $6,600. After 5 years of medical bills, we no longer have any emergency funds.
We are desperately trying to get Gregg his IVIG so that he doesn't deteriorate any further and so that he can find a new job.
How You Can Help
We are asking for help with paying for Gregg's current IVIG treatment, previous medical bills, and the start of his new deductible for when he does find a job. He's looking at paying three deductibles this year. The good news is that our out of pocket maximum is $6,500, so once we pay for this first treatment, we can focus on paying off past medical bills and saving for future medical expenses.
Fundraising team (2)
Vanessa Riley
Organizer
Spring, TX
Gregg Riley
Team member
