Why We Need Lyme Disease Legislation

In 2016, we heard a lot about the Zika virus, concerns about it during the Olympics, and if it could travel/migrate here to the U.S. However, there may be a more prevalent infectious disease that we are overlooking, one that is in our own backyard: Lyme disease.

What is Lyme disease?

Lyme disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia Burgdorferi. The Lyme spirochete can cause infection of multiple organs and produce a wide range of symptoms. Symptoms can include flu-like symptoms, rash, joint pain, fevers, nausea, severe neurological problems, psychological issues, heart problems (irregular beat, lyme carditis, etc), severe fatigue, etc. According to the CDC, Lyme disease infects over 300,000 people a year (10 times more than previously reported), making it the fastest growing vector-borne disease in the United States.

Yet, why is it so difficult for Lyme patients to get treatment? Because insurance companies don’t cover treatment for chronic Lyme, in fact they deny it even exists, forcing Lyme patients to pay out-of-pocket for any treatment. The insurance companies take their cue from the Infectious Diseases Society of America (IDSA)’s recommended treatment guidelines for Lyme, guidelines that have been accused by critics of being outdated and misinformed.

Contrary to what the IDSA recommends are the guidelines set forth by the International Lyme and Associated Diseases Society (ILADS), which include longer-term treatment if needed for individuals who have been chronically ill from Lyme or its co-infections. However, despite these guidelines, insurance companies still choose sides in this medical debate and refuse to cover long-term treatment.

So how do Lyme patients get the treatment they need without going bankrupt? Besides changing the alleged misinformed treatment guidelines put forth by the IDSA and CDC, legislation would need to be passed, either collectively at the state level or preferably at the federal level, to get insurance companies to cover long-term Lyme treatment. This legislation would give the patients their right to get affordable treatment and gives doctors the ability to use their own judgment on a case-by-case basis.

In August of 2016, Massachusetts’ senators voted to enact a bill requiring health insurance companies to cover long-term antibiotic treatment for Lyme disease when prescribed by a licensed physician. While this was a great victory for the Lyme community and the people of Massachusetts, it only affects that one state.

A few other states already have laws relating to Lyme disease. For example, the state of California already has 2005’s AB592, the physician’s protection bill that gives doctors the freedom to prescribe Lyme treatment without prosecution. However, since the insurance companies still won’t cover that treatment, it makes that treatment inaccessible to most patients even if it’s deemed medically necessary and prescribed by their physicians.

How do we move forward?

The absence of Lyme legislation would not only continue to force Lyme patients to face barrier after barrier while struggling to get treatment, but some experts say it would actually end up raising consumer costs of healthcare, cost insurance companies more in the long run (in some cases hundreds of thousands of dollars) by keeping these patients sick long-term, as well as cost the government more by keeping more people on disability. According to 2015 research from the Johns Hopkins Bloomberg School of Public Health, “Lyme disease costs the U.S. health care system between $712 million and $1.3 billion a year.” However, if Lyme patients had the insurance coverage needed to appropriately treat the disease as well as more reliable testing to catch the disease in the early stages, this could cut the cost by hopefully limiting the number of chronic cases. And if all that weren’t enough, legislation would also literally save lives.

Insurance companies should not be able to cherry-pick which diseases they decide to cover. As stated by the World Health Organization, “better health needs health [care] systems that deliver the full range of services, not only for a select few diseases.”

Since the November 8th election, there’s been a great deal of discussion between partisan legislators, as well as news pundits, about further healthcare reform. Regardless of party politics, if or when that does actually happen, the new President, his administration, and/or Congressional representatives need to consider adding new legislation that would require coverage of long-term Lyme treatment. As of right now, that treatment is not covered, leaving many patients who are disabled from this disease feeling stranded or financially drained. It is time to place the utmost importance on patient care and personalized medicine, and leave the outdated paradigms regarding Lyme recognition and treatment behind. After all, who are we as a society if we ignore the suffering of others and leave those severely disabled to fend for themselves?

The purpose of this article is not necessarily to argue which treatment guidelines are correct, but rather to argue that the choice of treatment should be left to the patient and their physician, and allow them to use their discretion to consider each case individually. And to do that, these patients need to have their health insurance cover their disease.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by ThitareeSarmkasat

Find this story helpful? Share it with someone you care about.

Related to Lyme Disease

man and woman holding each other and standing outside

4 Ways to Maintain a Healthy Relationship When You're Chronically Ill

Many distraught individuals struggling with serious illnesses have spilled their hearts to me. For the vast majority, their fading romantic relationships are a major source of their pain. They feel compelled to talk to a stranger such as myself as opposed to their partners because the wall between them is so thick that the feelings they [...]
drawing of a woman's face

To the Doctor Who Told Me Not to Give My Illness Power by Naming It

Dear medical professional whom I just met, When speaking with you one day, you said something I couldn’t shake. When I was about to tell you I have Lyme disease and a co-infection called Bartonella, you told me not to give an illness power by naming it. You continued to tell me why giving up [...]
husband and wife hugging and laughing with each other

What Birthdays, Anniversaries and Holidays Look Like With Lyme Disease

It is Lyme Disease Awareness Month, my husband’s birthday month and our anniversary month – yes, these special occasions should be celebrated all month long in my book. However, since beginning my husband’s aggressive Lyme disease treatment protocol, special dates and occasions look a little different. First let me present some facts: Lyme disease symptoms change on [...]
Black background with a golden light shining in the darkness.

The 'Glimmer of Hope' on the Good Days With Lyme Disease

Today I went to Target with my two little boys. A typical Tuesday activity for the average suburban mom of toddlers. I got some coffee, the kids got new Legos, I grabbed an extra large pack of size five diapers for my 2 year old. Once the bags were in the back of the mini [...]