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Hearing- February 28, 2018
Health & Government Operations
Honorable Delegate Shane E. Pendergrass
Honorable Health and Government Operations Committee Members
Honorable Senator Thomas M. Middleton
Honorable Senate Finance Committee Members
February 26, 2018
Hearing- February 28, 2018
1. Sunset Clause- If the bill passes in its current form or is saddled with amendments - very likely as no Lyme related bill anywhere has been passed in its original form- it must have an end point to prevent additional harm to patients and/or those treating them. If the bill is successful at achieving its goal the coverage can be extended.
2. Workers’ Compensation Coverage- Page 3, Lines 9-16. There are 2,626,510 people employed in Maryland (2016 figures). All employers in the State are required to have workers compensation insurance. For many employees that is their only health coverage. One WC insurer, IWIF/Chesapeake, noted 19 total Lyme related State claims involving prescriptions in 2002 with costs (medical care plus indemnity) of $933,071. IWIF advises that one case in a local jurisdiction incurred claim costs exceeding $112,000 [for one year]. Today those costs would be much higher. The burden on Lyme patients who are unable to work is tremendous. Having to pay for Lyme disease treatment out-of-pocket has and will continue to result in creating more homeless, chronically ill, disabled residents and/or will continue to make suicide appear to be a viable option.
QUOTE- "One hundred two insurance groups offer workers’ compensation insurance to Maryland employers.”
3. Medicare/Medicaid/MCHP Coverage- Adults who have chronic Lyme and tick borne disease symptoms and progress to the later more destructive stages, which are often incurable, typically end up financially devastated and disabled and as a result are eventually determined to be eligible for Medicare and/or Medicaid. Those who get to the point that they are only insured by Medicare and Medicaid must be covered in order to survive. Additionally, the second highest number of reported Lyme cases, after young children who need to be covered by the Maryland Children’s Health Program (MCHP), are older Americans.
4. Spotted Fever- Page 3, line 1. Spotted fevers should specifically be named as a related tick borne illness. (517 reported cases in Maryland between 2000 and 2007). Spotted Fevers, if the patient lives through the acute stages, sometimes requires lengthy or repeated treatment. There is also a chronic form of RMSF, and new spotted fevers are being discovered worldwide at an alarming rate.
QUOTE- “The ages of patients with sequelae [spotted fevers] ranged from 2 to 74 years (mean and median, 38 years); duration of follow-up ranged from 1 to 18 years (mean, 11 years).” Source
QUOTE- “Long-term neurological sequelae included paraparesis; hearing loss; peripheral neuropathy; bladder and bowel incontinence; cerebellar, vestibular, motor dysfunction; and language disorders. Nonneurological sequelae consisted of disability from limb amputation and scrotal pain following cutaneous necrosis. These data suggest that significant long-term morbidity is common in patients with severe illness due to RMSF.” Source
5. Loop Hole Alert- Names. Page 2, line 14. Should consider using either "Borrelia" and/or "Relapsing Fever Borrelia", and/or listing known Lyme related strains (stating clearly both "known" and unknown), such as: B. miyamotoi, B. mayonii, Borrelia garinii, Borrelia afzelii, Borrelia recurrentis, B. valaisana, B. Lusitaniae, B. andersoni, 25015, DN127, CA55, 25015, HK501, B. Miyamotoi, and B. Japonica and add “additional strains/species as identified”…
OR- use wording in the bill that encompasses all- Borrelia burgdorferi sensu lato and/or Borrelia burgdorferi sensu stricto. There is wording in the bill that includes other strains as recognized by the CDC, but it needs to be clarified.
The reasoning behind this change is the CDC currently recognizes only Borrelia burgdorferi, and more recently added Borrelia miyamotoi and Borrelia mayonii (2016) as the agents that cause actual "Lyme disease"; and then the later, only years after they were identified. Borrelia mayonii is thought to only occur in the upper mid-west (according to the CDC). Therefore, if it doesn’t officially exist in Maryland, insurers may question and deny coverage for other strains/species.
Borrelia miyamotoi is a strain that causes Lyme disease symptoms and has been detected in a number of states. This strain has been detected in Maryland, PA and VA patients and found in a number of other states. However, B. miyamotoi is not yet officially designated as a Maryland specific strain and is rarely, very rarely tested for by any physicians in our state or elsewhere.
Additionally, some strains once thought not to cause illness in humans have since been discovered to produce symptoms, but are not recognized “officially” by the CDC or anyone as being “Lyme disease”. The list of new disease causing organisms continues to grow even though there are no names assigned to the illnesses these strains produce and they are not considered to be “Lyme disease”.
6. Waiting To Become “Officially Recognized” Before Covered? If we must wait until the CDC "recognizes" additional strains (as the bill language states) many people could be denied for years or even decades on that basis alone. It could also stifle research and be a basis for manipulation by the CDC & insurers.
Remember- it took approximately two decades for the CDC to admit the actual cases of Lyme disease were 10 times higher than reported and they still don't admit chronic Lyme even exists. In fact, they fight it tooth and nail and refer to it instead as Post Treatment Lyme Disease Syndrome (PTLDS). Someone with this designation or diagnosis doesn't, according to the IDSA/CDC, require antibiotic treatment. Therefore, PTLDS must be included in the wording if the bill intent is to cover antimicrobial treatment for patients.
7. Most Lyme Treating Doctors Won’t Deal With Insurance- There are very few doctors in Maryland (less than 5%) treating chronically ill Lyme patients with antibiotics who accept insurance. This severely limits the bill’s ability to make significant, positive changes. (See recommendations below.)
8. You Can’t Insure What You Cant’ Get- A number of pharmacies are refusing to fill or refill antibiotic prescriptions for Lyme patients. It is expected this trend will continue as the IDSA/CDC puts more pressure on more pharmacies and the “antibiotic resistance” campaign progresses. This must be addressed in the bill.
9. Who Will Ultimately Pay For This Coverage? Will the price of antibiotics for those who pay cash (because they don’t have insurance or their doctors wont take insurance) be increased to supplement the low reimbursement rate that will be paid to pharmacies by insurers for antibiotics? How is this helping patients?
10. Antibiotics For MANY Tick Borne Diseases Are Not Covered In Bill- Page 2, lines 12- 31, and page 3, lines 1-2. Wording in this section only includes complications related to Borrelia burgdorferi, not the other strains of Borrelia, nor any of the other tick borne diseases which can cause severe, chronic symptoms, disability and death. It maybe meant to cover them, but it doesn’t.
11. What About (Life Saving) Non-Antibiotic Treatment? Covered or Not? The term “antibiotic” needs to be changed to “antimicrobial”. Example- Babesiosis is caused by a protozen transmitted via tick bite (sometimes acquired through blood transfusions & by way of organ donation). It is typically treated with Mepron (Atovaquone). Mepron is a quinone* antimicrobial not an antibiotic according to the manufacturer (GSK). The cost for 3 weeks of Mepron treatment generally runs between $850-$1450. Many patients require months or sometimes years of continual or repeated treatments ($15,300 to $26,100 per year).
Definition of Antibiotic- the word “antibiotic” refers to substances produced by microorganisms that act against another microorganism. Thus, the term antibiotics does not include any antimicrobial substances that are synthetic (sulfonamides and quinolones), or semisynthetic (methicillin and amoxicillin), or those which come from plants (quercetin and alkaloids) or animals (lysozyme). In contrast, the term “antimicrobials” include all agents that act against all types of microorganisms – bacteria (antibacterial), viruses (antiviral), fungi (antifungal) and protozoa (antiprotozoal). To note- many children (and some adults) are prescribed amoxicillin as a first line of defense when they get Lyme disease. Their treatment won’t be covered if you use the word “antibiotic”.
For patients who can not tolerate or have an allergy to Mepron, plant based or other antimicrobials may be prescribed. These formulations are not considered to be true “antibiotics” either and may not be covered. (See “definition” above.)
Using the term “antibiotic” would also automatically deny coverage for a variety of antimicrobials used to treat Lyme and tick borne diseases, such as levofloxacin (Levaquin), ciprofloxacin (Cipro), moxifloxacin (Avelox), norfloxacin (Noroxin), ofloxacin (Floxin) and gemifloxacin (Factive).
12. Loop Hole Alert- Page 3, lines 1-3. According to the CDC only certain types of ticks carry and can transmit certain disease causing organisms. If someone has Lyme disease (B. burgdorferi) and tests positive for additional tick borne diseases not officially recognized as being transmitted by the tick known to harbor and transmit Lyme disease, patients can be denied treatment coverage.
13. The NOT Transmitted By Ticks Argument- Page 3, lines 4-6. For many years Johns Hopkins, for example, refused to admit Bartonella sp. could be found in ticks even after more than 40 published studies proved otherwise (it had originally been detected in fleas). As a result, many Lyme patients went to Hopkins for treatment with positive test results and could not get treatment. Once proven wrong, Hopkins then stated Bartonella sp. could not be transmitted by ticks while more patients were testing positive for Bartonellosis and suffering from lack of a true and complete diagnosis and appropriate treatment. Might this bill be more effective if the wording stated "tick or vector borne diseases"?
Since transfusion acquired tick/vector borne diseases are on the rise, shouldn’t that be addressed in the insurance coverage too?
14. How Much Is Too Much? Page 3, lines 21-22. What about doctors who order multiple IV antibiotics and/or orals for months to years at a time? What is the end point for treatment? How can we keep patients safe from this unending, unsupported, extensive treatment protocol that may or may not be necessary (no tests to prove clearance of infection) until the science catches up?
15. NO LIMITATIONS- EVEN ON EXPERIMENTAL TREATMENTS? Page 3, lines 23-26. Isn't this a dangerous policy, a potential free-for-all for patients to be exposed to? What about the doctor (bad example, but to make a point) who orders IV oatmeal infusions for 9 months? How does this bill protect patients from this kind of abuse? You’re right, it doesn't!
Recommendations
In lieu of a bill this session and until the problems and concerns in it are adequately addressed, I offer a few suggestions...
Approach the Board of Physicians and the Maryland Department of Health and Mental Hygiene and discuss getting both ILADS and IDSA Lyme disease diagnostic and treatment guidelines on equal footing in the state, giving patients and doctors a choice. All these years insurers have only supported IDSA’s limited treatment protocols because it saves them money. This one solution is needed more than any other attempted legislative or other remedy.
Don’t waste an opportunity to make real and significant changes. Please don’t try to get another bill passed for the sake of passing a bill as some of the supporters attending the hearing have been doing. All other avenues to address insurance issues should have first been explored and exhausted before a bill was even considered. Don’t waste this opportunity on a bill that may only help a minority of patients and doctors, if it even does that. Let’s look for other solutions, which has not been done by those pushing for this legislation.
The bill supporters should spend more time educating rather than fund raising and legislating. Have them put some ELBOW GREASE into their efforts. Remember- educate before you legislate!
Properly educate physicians and other health care professionals so more who can or will accept insurance will begin treating patients adequately. THEN if a bill is still necessary to cover the patients medications it can be considered.
Get the facts and figures together and send letters to insurers, the State and the federal government indicating how much each of them could save if they would approve treatment as the doctors ordered, rather than deny patients who then become chronically ill and/or disabled and still require treatment at even longer intervals and often repeated treatments for a life time.
Attempting to legislate medical treatment of any kind can be dangerous.
Lucy Barnes, Director
Lyme Disease Education & Support Groups of Maryland
631 Railroad Avenue
Centreville, MD 21617
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