Insurance and Lyme disease

The high costs associated with specialized medical treatment and long term medical care has severely affected many patients suffering from Late-Stage and/or Chronic Lyme. More and more specialized doctors (even some primary care physicians) are requiring direct payment and do not accept insurance. This means that patients have to file medical claims themselves through their own insurance companies and may or may not be reimbursed for their total medical expenses. Because the IDSA (Infectious Disease Society of America) has repeatedly stated that long-term antibiotic treatment is not recommended (generally over 30 days of IV therapy) or beneficial to Lyme patients, many insurance companies will not cover treatment longer than 30 days without substantial documentation and proven illness. This is one of the controversial topics concerning this disease. The other issue is that insurance companies have almost as much say about the treatment patients receive as their doctors. You may be required to get second opinions from doctors hired by insurance companies who may diagnose you with some other illness, thus denying your original claim for medical expenses. Another tactic insurance companies use is to deny medications if they are not specific for Lyme treatment. Because many other drugs can be used to treat Lyme and the many co-infections, they may be denied on these grounds. Be prepared to argue and fight for your rights. Because long term treatment is expensive for insurance companies, most will not fully cover what the total cost is for the average patient to get well. However, there are steps you can take to maximize your payments and even possibly get full medical coverage of your treatments. The information provided below is from those who have gone through this experience and provide these "lessons learned" for the benefit of everyone going through this process in the future.

Steps to take:

  1. Make sure your complaint is legitimate. If there was an error in filing your claim, give your insurance company time to fix this problem. Sometimes the person who enters the information into the company computer makes a mistake and your claim is denied. Bring this to the attention of a customer care representative and ask that the claim be reconsidered. Ask for an Explanation of Benefits (called an EOB) and get it in writing. If the company you work for is self insured, then contact your employer, explain your situation and ask them to write a letter on your behalf. Since the money spent on your health care comes from your employer, patients who work for companies who are self insured have the advantage of being able to get a company letter telling the insurance company to cover your expenses. You may also need additional letters from your doctors explaining your condition in detail and in justifying their diagnosis and treatment options.
  2. Contact your state Insurance Commissioner. The state Commissioner has little authority over self insured companies but can assist you in putting pressure on your insurance company. If you can show that you are getting healthy and that you will incur reduced medical costs in the future for your health care provider, and then the justifiable additional costs now may be understandable. By documenting your treatment and improving medical condition, you just may be able to get them to reverse their decision and pay for your expenses.
  3. Keep detailed records and be persistent. For example one NC resident was able to get 95% of his expenses ($16,000) paid after 5 months of nearly daily calling and many hours talking with customer service. Do not get mad when dealing with customer service reps but demonstrate that you will do whatever it takes to get your medical care expenses back. Know that it may take many months to finally settle all of your claims.
  4. Talk to other patients who have gone through this process already. They may be able to offer insight and support on what are the best steps to take.
  5. Ask around the Lyme community and try to locate other individuals who have/had Lyme disease and are also insured by your insurance company. If you are able to locate another individual who has already gone through the lengthy claim process and were able to recover some money then use this person's case to help with yours. Ask the individual if it's ok to reference their claims and the fact that they were able to get some costs reimbursed back to them.
  6. File an Appeal. If you are not satisfied with your insurance and they deny coverage after you have exhausted every possibility.
  7. Draw attention to the media or escalate your story to national attention. Nobody likes negative publicity and this option may work to your advantage. As a last resort, initiate a lawsuit against the insurance company. As long as you can show proof that your health has improved and that the diagnosis was correct, you may have a legal case to recover your money. Seek the assistance of legal groups and get fully informed on the procedures before using this option. This is only a last resort and to be done when all other options have failed. Try to work with your insurance company and use every means possible before hiring a lawyer. You may never get all your money back using this process but any amount is better than none.

Workers Compensation

Recently a resident of South Carolina who was diagnosed with Lyme disease won a legal court case. pdf Another resident of Cary, NC who has complications related to Lyme disease and has been out of work for nearly one year, is currently proceeding with her case for Workers Comp. legal case. If you are out of work for any length of time, apply for compensation under the guidelines of your plan. Almost every company or employer has some form of Workers Compensation program. Investigate every possibility as inability to effectively work for many months, is common in late-stage Lyme and during the treatment phase.

Two Standards of Care

Read the following article concerning the controversy in care of patients when dealing with Lyme disease:

This link will provide you with detailed information on insurance issues and is a good source of data pertaining to filing claims and seeing specialist:

Stages of Lyme disease and Insurance Coverage

Acute Lyme - Patient recently infected (less than a month). This usually involves thirty days or less of oral antibiotics. You may take one or a combination of drugs. Most insurance plans will fully cover the cost of this treatment if you see a doctor in network. Your doctor may need to provide additional information and documentation but the patient has the legal right to be treated to this standard. The medical costs for someone who does not have insurance will depend on what the doctor charges you for the visits. Ask in advance the cost of any doctor fees and laboratory testing that may be required. Make sure you document all your symptoms and get copies of your tests and doctor notes. This information will be helpful should you have to file a lost wages claim. Workers Comp or some other plan would fall into this category, should you be out of work or lose income during this time frame.

Late-stage or Chronic Lyme - Anyone infected with Lyme disease for a longer period, will fall into this category. This is where the insurance problems usually start. Confirm which doctors are "In-Network" for your policy. Some insurance companies require a referral before seeing a specialist, so unless you have the money to spend for specialists, first see doctors that are in your network coverage. Depending on this diagnosis, you have to decide if you are satisfied with your medical care and this doctor's opinion. Because patients in this category who have Lyme disease may average 5-10 doctor visits prior to the correct diagnosis, this can be a long and frustrating period. Questions to consider are:

If you choose to see a specialist the cost will normally be 200-400 dollars per hour unless they are network doctors covered by your insurance. Then you need to consider, how familiar are they in diagnosing and properly treating Lyme. Those with Chronic Lyme will tell you that getting the initial diagnosis is wonderful but really means nothing if the treatment protocol the doctor uses is ineffective and you continue to suffer (identifying the disease is one thing but effectively treating and knowing what combinations of drugs to use is another, and can be very challenging). Lyme is difficult to properly treat and many doctors are not familiar with complications of Lyme, IV antibiotic usage, co infection treatments and combination drugs, which are often required to treat this phase of infection. The physician should closely monitor the patient and adjust the protocol and treatment plan according to the response and recovery of the patient. Patients who are very symptomatic may need treatment for many months and with varying combinations of antibiotics. Sadly many doctors are not familiar with this type of treatment. Not everyone will require IV treatments, but those not properly treated early on may continue to suffer with increasing symptoms until your disease is treated appropriately. Normally doctors will start their patients out on oral antibiotics and depending on their symptoms and reaction to treatment, move up to IV antibiotics if required. This is where the dollar expense increases rapidly. In order for any hope for insurance coverage you need excellent documentation, your complete lab results and good write-ups from your doctor justifying your treatment. Contact your insurance company prior to seeing Out-of-Network doctors to obtain guidance on seeing these specialists. Some insurance companies have procedures to follow and will cover Out-of-Network doctors at In-Network rates for the patient as long as certain procedures are followed. This may save the patient many thousands of dollars by knowing this beforehand. Be sure to confirm all your policy deductibles. Many insurance companies have written documentation and procedures to follow in the treatment of Lyme. Ask to have a copy sent to you and make sure you comply with what they recommend. This will insure that you are reimbursed for everything they recommend, as you have followed their instructions fully. Pre-approval may save you thousands of dollars later in claims. Know your claim requirements prior to starting therapy and if required ask to get approval to see a Lyme specialist for your treatment. Some insurance companies will only approve select doctors and by seeing one of them, your expenses may be partially or even fully covered. By gong to a specialist who understands diagnosing and treating tick-related disease, it may cost you more initially, but in the long run it will save you money and precious time in restoring your health.

(In the coming months we will published details below on major insurance companies and the procedures to follow if you are covered by a specific plan and seek Lyme (or any tick-related disease treatment).

This page was last updated on July 3, 2012