TOUCHED BY LYME: IVs remain financial stumbling block for many Lyme patients
Long-term intravenous antibiotic treatment for Lyme disease is very expensive and often not covered by health insurance. One Wyoming couple found it pays to shop around.
Readers of this blog may remember learning about INFUSING FOR LYMIES, a free e-book written by a Lyme patient about how to save money on IV treatment for Lyme disease. Here’s an email I just received from the wife of a Lyme patient:
Just stumbled onto the guide to managing PICC and IV infusion. Wish I had stumbled last October when my husband had a PICC line inserted to hopefully help stem the symptoms of his long undiagnosed Lyme Disease. We live in a 20,000 person county in Wyoming and the local hospital oncology department put in the PICC. They referred the prescription to their usual infusion provider (we didn’t know any better so let them).
Cost per week was $3000!!!!!!! First time I got paperwork I thought they meant per month! I had several conversations with them trying to understand the high cost. They claimed their hands were tied due to contracts with my insurance provider. They furthered this by saying that the contracts were to protect me! I sure didn’t feel protected when my insurance refused to pay.
After 2 months I stopped the home health nurses visits at $180 a week. I never wanted to be a nurse but life moves in mysterious ways and a bit of a nurse I’ve become.
So in talking with someone in an adjacent state with the same ailment. I learned about a pharmacy in a small town who would provide the same service as the $3000 a week — for $1000 a MONTH! This system is really broken! Of course it has taken me 6 months of appeals with my insurance company to request payment for the two months with the cheaper provider. Forget that I saved them almost $4000 with being our own home health nurse.
Click here to read INFUSING FOR LYMIES.
Click here to read the blog I wrote about it last January.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, CALDA’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.
Hello : )
I went through something similar when after 8 months of going everyday to my Lyme Specialist's office to receive my daily IV Rocephin dose, he decided I had been on it "long enough" and promptly took me off of it.
Two weeks later I woke up completely paralyzed, and had to wait for my mom to find me and literally carry me back to the doc's office to get the IV again. About a half hour after receiving the dose, I was able to slowly move, open my eyes, and start talking again. An hour later – I actually walked out of his office.
Three days later, my doctor informed me that my insurance would no longer cover my treatment, and told me I would have to pay $200/day to continue on the IV!
I called my insurance company crying hysterically, begging them to reconsider, explaining to them what would happen to me if I discontinued it. What they told me, will forever baffle me…
They said, that they WERE willing to pay for the Dr.'s visit and infusion, but not the Rocephin bottle itself, and also mentioned that the payment for the actual medication was only an $8.00 difference from what they had been paying him all along!
After learning this I immediately called my Dr's office and asked them if I could pay the $8.00 myself/day to continue with the therapy. The response I got was shocking – they informed me that it wasn't a possibility, as that was a "contract" they had signed specifically with HIP Medicaid, and thus, didn't apply to me. I HAD to pay the $200/day or would be refused treatment.
To make matters worse, my doctor conveniently posted a sign a week later saying that the office was no longer accepting my insurance AT ALL.
For the next couple of weeks, I literally sold EVERYTHING I owned to try to make those payments. Finally, I had nothing left to sell, and my sister (who was a pharmaceutical rep), miraculously came to my rescue, and found a sympathetic doctor who was able to sell me everything I needed to administer the medicine to myself for $1,000/month. (Trust me, after watching, teenage medical assistants administer the drug to me for 8 months, I became quite the expert at learning how to do it myself!)
After two years of waiting, my disability claim finally went through, and I ended up spending most of that money paying for this. After a year and a half on the IV, I surprisingly discovered that Dr.'s in Connecticut were now allowed to PRESCRIBE the IV and infusion set to Lyme Patients without any repercussions to them as long as the patient had a documented history of having the infection.
I took the prescription, found a local pharmacist (my "angel," as I call him) who was able to get the everything I needed for only $500/month – AND, he was still making a profit!
Luckily, I eventually found another Lyme Specialist in Connecticut who helped me slowly transition off the IV without having such severe relapses by using highly potent, anti-microbial herbal extracts in conjunction with various types of oral antibiotics, but those memories of my "IV days" will ALWAYS disgust, alarm, and forever haunt me.
I simply cannot believe how people in the medical industry feel that it is "completely fine" to exploit and profit off of such desperately sick individuals. In my eyes, that is an utter display of inhumanity at its worst.
I hope this NEVER happens to you…
Sincerely,
Sarah Lamando
http://www.ASliceofLyme.blogspot.com
Hi Sarah,
I find encouragement in your post. I live in Connecticut and was curious who your doctors are. My general practitioner has me on minocycline now for over 3 months and I am still not feeling great, was thinking it is time for a specialist.
Logsawyer@aol.com for anyone who has found a good doctor in this area.
Thanks,
Jordan
Jordan: Recommend you contact ConnecticutLyme, an online support group, who may be able to share names and resources in your area.
where did yougetcheaper supplies. I am feeling desperate after having headaches
falling, confusion. have white matter lesions on brain mri.