TOUCHED BY LYME: Financial help for Lyme drugs?
Sooner or later, anyone dealing with Lyme disease comes face to face with the high cost of prescription medicines. Even those who start out with insurance coverage for drugs may find their benefits run out before their need for them does; or the medicines they require aren’t covered on their plan; or the co-pay for certain drugs is inordinately high. Then there are patients who flat out have no insurance coverage for drugs at all.
There are a number of programs around to help provide free or low-cost medicines to low-income people who are uninsured or under-insured. Many are run by the manufacturer of the medication in question. But it can be daunting to try to track them down and figure out if you qualify.
I just learned about a website that can simplify the process. Needymeds.org functions as a clearinghouse for a wide variety of patience assistance programs (PAPs). For starters, you look up your brand name or generic drugs to find out if they are available through a PAP. If they are, you click on a link to find out more information and how to apply.
I checked on several drugs that might be of interest to people with Lyme and coinfections. Doxyclycline, mepron, malarone, biaxin, levaquin and valtrex all showed up as available through PAPs. Rocephin did not.
Each program has its own rules and application process. Some require more medical and financial information than others. All require a doctor’s signature.
When you click on mepron, it takes you to the Bridges to Access website run by pharmaceutical manufacturer GlaxoSmithKline. To qualify for this program, you must be a US resident, have no prescription health benefits, and meet income requirements. (A family of four needs an annual income of $55,000 or less. Slightly higher for Alaska and Hawaii.)
Each company selects which drugs are available on their programs and how long a person can receive assistance. GSK provides an initial 60-day supply of mepron, with refills available.
Needymeds.org also provides links to other kinds of assistance programs, including state and federal programs for low-income residents and discount drug cards. If you need this kind of help, I hope you’ll take a look at the site and see what assistance may be available to you.
Contact the author at dleland@lymedisease.org.
I like many people with have gone through many years (8) and many doctors trying to find out what is wrong with me. Recently I have been diagnosed with Central Nervous System Vasculitis, Lyme disease, and Rocky Mountain Spotted Feaver. Through the mountain of tests and blood work I have found out that I also have Factor 5 Leiden and am having problems with my liver which seem to be complicating things. I am 43 years old and I am starting to develope multiple neurological problems as will as the overwhelming sick that is brought on by lyme. I have insurance but the only doctor that will treat me for lyme does not accept insurance and the treatment expenses are more than two years of my take home pay. At this point I am out of money, am struggling to make it through a day of work and feel like the if I can't get treatment I am going to die. Can any one help?
I have been searching for a place who will help provide my sister with the treatment of Lymes Disease, we are canadian citizens and can't get financial help anywhere, she is in a chronic state and needs help….is there anywhere a canadian can go to get the proper help with funding for her treatments
Karen, recommend you contact the Canadian Lyme Disease Foundation. Their website is canlyme.org.
There’s a more complete list of prescription assistance programs and prescription discount programs, as well as lab tests and other assistance programs, at http://lymeunderground.com/survival-tactics-getting-by-on-a-limited-budget/.
Jessica Wussow of Nelson was diagnosed with chronic Lyme disease in May 2013. For many, that diagnosis would have been devastating, but for Wussow, it was a relief.
“I actually felt relief that I finally had an answer,” she said. “After years of test after test, specialist after specialist and thousands of miles traveled, I now had an answer.”
SEEKING ANSWERS
Wussow started experiencing neck pain and headaches about four years earlier and sought medical help. Despite numerous tests, a cause could not be found.
As time went on, the symptoms worsened. She experienced muscle and joint pain, eye ulcers and one to three hemifacial spasms per day.
“It was just crazy,” Wussow said. “I had never even really been sick before. I was a very healthy person. And it was frustrating that no one could help me.”
Her Alexandria physician referred her to the University of Minnesota. For the next eight months, she underwent more tests, hundreds of labs and saw six different neurologists.
She was tested for Lyme disease, multiple sclerosis, amyotrophic lateral sclerosis (ALS), strokes…everything was negative.
She then heard about another doctor in Alexandria who may be able to help. Despite the fact that she had been tested for Lyme disease five times, including an invasive lumbar puncture test, and all five had come back negative, this doctor was confident she was suffering from chronic Lyme disease.
Wussow agreed.
“I did a lot of research and found out that a lot of times the tests will show up negative if you’ve had it for more than a couple of months,” she said. “All of the signs and symptoms matched up. I really felt this was what I had, but so far, nothing confirmed that.”
Two more tests were done, and this time both were positive for Lyme disease.
FOCUS ON RECOVERY
Now that she had a diagnosis, Wussow could focus on the treatment.
In June 2013, she had a Hickman catheter inserted so she could begin intravenous antibiotic treatments, along with oral medications.
Six months went by and her condition only worsened. She contracted clostridium difficile (C. diff), a bacterium that can cause life-threatening inflammation of the colon, and intestinal candida, a yeast infection that often occurs in those with weakened immune systems.
“I would lie and cry or scream in pain, as it was so severe,” Wussow said.
She then heard about a doctor in southern Minnesota who specialized in Lyme disease. She was on a waiting list for four months before she got an appointment in December 2013.
By then, Wussow suffered from severe nerve damage in the arms and legs, mostly on the right side; weakness; numbness; memory loss; facial paralysis; pain; and headaches.
She had Jarisch-Herxheimer Reactions (herxing), which occur when injured or dead bacteria release toxins into the blood and tissues faster than the body can handle it, provoking a sudden, exaggerated inflammatory response.
She was diagnosed with multiple co-infections, two forms of pneumonia, and was suffering intestinal disorders from the heavy use of antibiotics.
Wussow and her doctor agreed on an aggressive treatment regime, which could be done at home.
She started with IVs of one drug three times a day, which took an hour and 15 minutes each time, another IV of one drug per day that took two hours, as well as more than 75 oral medications and supplements a day.
She travels to see her doctor once every four weeks, and has weekly phone appointments with her. She also has labs done once a week by a home health nurse.
After a few weeks, her joint and muscle pain and headaches lessened, but she had plenty of other problems to deal with.
She had fungus growing in her airway, which caused pain and at times left her gasping for breath, her liver counts were high, her muscles were weak, and her knees would buckle.
She continued this aggressive treatment for five weeks. In mid-February, it was stopped. The doctor determined Wussow’s body couldn’t handle any more IV antibiotic treatments and fixing the intestinal problems would have to become the main point of focus for now.
She’s on a new medication and supplement plan to fight the C. diff and candida and will be seeing an internal medicine doctor for further advisement.
She is also scheduled to see a cardiologist for some heart issues that have developed.
“As each day goes on after quitting all the IV meds, I get more sore and the arthritis worsens,” Wussow said. “I feel as though the Lyme is multiplying, since we are not able to attack it right now.”
THE FUTURE
There is no cure for chronic Lyme disease, so the focus is on minimizing and treating the symptoms. The longer a person goes untreated, the longer it takes to recover.
Wussow said it could take anywhere from one to five years or even more to get her symptoms under control and begin living a somewhat normal life again.
But the rest of her life will require lifestyle and diet changes. She is following a gluten, dairy and sugar-free diet, using as many organic, hormone-free products as she can.
FINANCIAL AND EMOTIONAL CHALLENGES
In January, Wussow had to quit her job as a program counselor working with adults with disabilities and mental illness.
The loss of income, along with the expenses of the treatments, most of which are not covered by insurance (see related pullout), has been debilitating for the family. In 2013, she had $12,000 of out-of-pocket medical expenses.
“We have so many outstanding medical bills,” she said. “It took thousands of dollars of tests and many cash-only doctors to get a proper diagnosis. Each week we pay hundreds to keep me going.
“I feel as though my life has been ripped away from me,” she added. “I have a good sense of humor, so that’s helped. Thank God that hasn’t left!”
Wussow’s husband, Steve, has been a great help with the treatments, as well as caring for the couple’s 10-year-old daughter, Kenna, and 8-year-old son, Brody.
“I have such a supportive and caring husband and would not be able to do this without him,” she said. “My children have been so wonderful and understanding that mommy can’t do the things she used to and one day it will be back to normal.”
BENEFIT
A spaghetti feed/silent auction benefit will be held for Jessica (Leaunart) Wussow Saturday, March 8 from 1 to 6 p.m. at the Alexandria Elks Lodge, 115 15th Avenue West. Funds will help defray medical expenses to treat her chronic Lyme disease.
Donations can also be made online at http://www.gofundme.com/lymewarriorjess or sent to the Jessica Wussow Benefit Account at Gate City Bank, 1603 Broadway Street, Alexandria, MN 56308.
For information, call Nicole at 320-241-7537
hello i need help my friend have the lyme disease what he should to he want to better
Melanie, here’s a list of information links to get started.
https://lymedisease.org/news/touchedbylyme/crash-course-in-lyme.html
My daughter was diagnosed with Lyme Disease back in 2011. Since then she had to go on disability because she could no longer work due to her severe symptoms. Up to this point, her treatment has only been addressed with doctors and specialists, who are not Lyme Disease specialists. As a result, they have only provided meds for the symptoms rather than attacking the disease itself. There are only a couple of Lyme Disease specialists in the U.S. and all take a lot of money, which she does not have. Any suggestions on where she could get financial assistance to fight off this disease? She is in pain 24/7 and getting worse every month. It’s already attacked her neurological system, muscular system, joints and brain fog. Can anyone help? Thank you.
There are a few sources of financial assistance for Lyme patients. Not many, alas. The LymeTAP program helps pay for diagnostic testing. The NeedyMeds website described above has information about a variety of ways to get some free or low cost drugs. There are ways to save money on certain lab tests. See the following link for more info: https://lymedisease.org/news/touchedbylyme/crash-course-in-lyme.html