Better yet drowning in debt: a story of broken healthcare and Lyme disease

Last IV treatment with a visit from Mona's friend Yael, who threw a fundraiser to help pay for some of Mona's medical bills in May 2011

After six years of wrestling with one of the most controversial and debilitating illnesses in modern history, Mona Motwani has successfully beat Lyme disease. She walks away from the crippling experience not only as a more enduring woman, but also gulping for air as she drowns in a pool of medical debt.

Mona is not alone as this is normalcy as far as patients in the United States with Lyme disease are concerned. An alleged 87 percent of them have exponential medical debt, according to Lyme Project and ILADS (International Lyme and Associated Disease Society).

Mona was interviewed for “50 Women” in April 2011 where her devastating struggle with Lyme will be recounted in a first person story. Lyme disease is one of the most commonly misdiagnosed diseases in the United States as the IDSA ( Infectious Disease Society of America)  refuses to recognize that it has the potential to progress into late stage. The definition and treatment standards of Lyme, which all major insurance companies follow, claim it can be treated in 28 days. For late stage Lyme patients, this is not adequate treatment. Unfortunately for them, most medical facilities are not even equipped to test for it and most physicians, despite the objective and measurable presence of spirochete bacteria Borrelia Burgdorferi, refuse to admit that it exists. Patients are misdiagnosed and often forced to shoulder the burden of their own medical expenses since most effective Lyme treatments are holistic in nature and not covered by insurance carriers.

“The IDSA or Infectious Disease Society of America claims CLD (chronic lyme disease) doesn’t exist. This allows the western health care system to deny diagnosis and treatment. It allows insurance companies to refuse to pay for treatment and to go after providers who treat CLD and ruin them by threatening their medical licenses and livelihood. Insurance companies have sued some doctors for over prescribing antibiotics and won!” explained Mara Williams, RN, MSN, ANP-BC and author of the bestselling book “Natures Dirty Needle” in a previous interview for 50womenblog.org.

“When someone with CLD is forced to deal with this part of the system, they are told it is all in their head and offered antidepressants. The way most providers practice allows them 5-10 minutes with a patient per visit. Someone with CLD requires much more intensive time and intervention. Most providers don’t want complex patients so frequently a patient will be given a basic Antibody test for Lyme which is not reliable and usually is negative even when someone has Lyme.  If patients were correctly assessed initially they would be less sick and easier to treat and cure. If ER docs had better knowledge of Lyme they could treat more acute cases, prevent CLD and the years of suffering and years of money spent on care that wouldn’t be needed”.

Late stage Lyme disease or CLD is defined as an infectious bacterial tick borne disease that is transmitted through the bite of a tick. Perhaps this sounds easily reversible, but when the tick bite is missed and a person goes months or even years without knowing that they have been infected, the disease enters its late disseminated stages, infecting many if not all systems of the body: limbic, neurological, physical, psychiatric, cardiac and more. At this point, it is enigmatic, painful, and expensive to treat.

Individuals harboring Lyme disease for extended time periods become incredibly ill and at this stage will often require years of treatment. By the time a Lyme patient reaches late stage- the disease is embedded in their tissue and strongly affects their central nervous system and brain.

Mona discusses its debilitating effects in her previous article.

Mona was insured with Blue Shield of California and was a successful Civil Rights attorney prior to having to leave her job after the disease disabled her several years ago. She is now 34 years old and her medical debt from treating Lyme disease is hundreds of thousands of dollars.
Time after time, Blue Shield of California denied coverage to Mona simply because they rely on the IDSA 28 day treatment standard of Lyme disease.

Using credit cards, her family’s retirement funds and other methods of payment, Mona’s medical debt totals over $200,000 dollars from the last five years of treating Lyme and bouncing from physician to physician to get an accurate diagnosis for it.

Read Mona’s frustration with Blue Shield of California in her own words.

Even with health insurance, Mona could not always get coverage for the treatment drugs and was forced to pay for them out of pocket, one of them amounting to id="mce_marker",300 dollars a month. For a patient taking up to 70 pills a day, this can be financially devastating.
Eventually she was placed on IV antibiotic medications and had a picc line inserted into her arm to intravenously infuse antibiotics into her body daily in order to kill off budding borrelia burgdoferi bacteria.  Blue Shield of California refused to cover most of these treatments.

“Back in June 2010, after I had spent months trying to appeal the denial of my IV meds for Lyme, and got nowhere fast with the Appeals Unit at Blue Shield of California (red tape consistently), I sent out emails like clockwork trying to find someone in the media who would cover my story in the hopes of convincing Blue Shield of California to address my case properly. I was at my wit’s end with Blue Shield. I’ve probably logged OVER 85 phone calls with them in 2010 alone, most of the time I was so sick I could barely get up from my bed and infusing medication into my picc line. CBS KPIX San Francisco agreed to do a piece on my story. (Click here to view the piece )
After CBS KPIX contacted the CA Department of Managed Health Care (DMHC) and the CA Department of Insurance (CDI) – state agencies who oversee insurance denials and disputes –, and the segment aired, Blue Shield agreed to  cover my IV meds for one of the preceding last 10 months of 2010″ Mona explained.

After this incident, Blue Shield of California continued to cover her IV supplies and antibiotic therapy for the next approximately 8 months. However, she recently received a January 2012 notice claiming  that Blue Shield of California covered her IV meds and supplies by mistake and they are now going to recoup all of the money they paid to the pharmacy and infusion supply company. Mona just received a bill for  $2,520.51.

IV medications are traditional western medical protocol. If this is not covered by insurance one can only imagine holistic treatments and their dent on the wallets of these patients.

It is now January 2012 and Mona recently had her picc line removed and completed 1 year of successful IV antibiotic therapy. Though the IV antibiotics helped her get better, she was not completely healthy again because she was unable to complete the remaining therapy due to stomach and pancreas damage.

Through a recent 5 months of treatment with a successful physician who specializes in the unique holistic treatment of many serious illnesses including Lyme disease in New York.  Mona’s out of pocket expenses totaled $20,000.  The  treatments she experienced are defined as  ‘holistic’ compared to traditional Western medicine.  They consisted of European Biological Medicine, homeopathic medicine, supplements, Bioenergetic medicine, and other intravenous non-drug-based therapies.  Although her health and vitality have returned after this treatment, her continued medical bills to maintain that regiment total about id="mce_marker"500 dollars a month.  Additionally, she pays about $2000 dollars a month in other Western medical costs (health insurance, deductibles, etc.).

“It’s a sad state of affairs that this disease and so many others can be treated by holistic methods and yet health insurance covers NONE of these options” said Mona. “Insurance just began to cover acupuncture, but not mine. The practitioners who get the best results and cure people are not covered by insurance, leaving only those with access to credit or money to pay for it. And, in my situation, I am still unable to even pay my basic living costs, let alone my roughly $3000/month in medical bills without any income. Even with income, it would be impossible. My parents, who are in their late 60’s and early 70’s, have maxed out their credit cards and used their retirement savings to help me get better. I have also maxed out all my credit cards. I currently have over $30,000 of credit card debt from medical bills.

Lyme disease treatment and diagnostic protocol are ideal examples of the corrupt, broken medical insurance system the United States currently operates. How is all of this medical debt contorting our economy? Is it really effective to force patients to shoulder the burdens of such expensive treatments? Millions of Americans cannot even afford health insurance and those who can still receive denials of coverage for necessary yet costly medications.

A past interview with Anne Helen, a heart transplant patient, for “50 Women” also revealed the broken healthcare system as Anne Helen reported having to accept state  medical benefits generally given to low-income individuals since health insurance companies refused to cover her- subjecting her to income caps and welfare regulations. The fact is no insurance company wants to cover a patient with her medical history or Mona’s and they are not forced to. It is the government who must accept responsibility in these cases and ultimately taxpayers.

Recent progress in Lyme disease legislation reveals the changing landscape of how Lyme disease is viewed and treated. The central element in this debate which must be modified are the IDSA treatment guidelines, as these are central to insurance treatment policies and health facility treatment protocols.

Sign the IDSA petition here

If you are interested in donating to help Mona with her medical debt, please visit http://monamorphosis.blogspot.com/p/donationsfundraising-for-medical.html  The donate button is on the top of her blog.

View Mona’s testimony on CBS-KPIX San Francisco

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