Know Your Protected Rights to Covered Care for Chronic Lyme Under the Affordable Care Act
Jenna Luche-Thayer
![Jenna Luche-Thayer]()
Jenna Luche-Thayer
Senior Advisor - US Government, United Nations, non-profits, corporate social responsibility programs
Did you know the Affordable Care Act (ACA) supports the coverage of 90 to 180 days of antibiotic treatment for Lyme? and more as needed? Does this mean you will 'automatically' be given these treatment options? Not if you don't even know you have a right to this extended treatment and coverage!
The following information details your protected rights to covered care for Chronic Lyme under the ACA.
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In 2012, the federal government requested all 50 states to submit a “benchmark plan” for consideration under the new Affordable Care Act (ACA). All benchmark plans were requested to include chronic disease management and care that is considered essential, or “essential health benefit”.
Essential health benefits are to be covered for pre-existing and chronic illness recognized by the ACA.
The ACA requires non-grandfathered health plans in the individual and small group markets to cover essential health benefits (EHB), which include items and services in the following ten benefit categories: (1) ambulatory patient services; (2) emergency services; (3) hospitalization; (4) maternity and newborn care; (5) mental health and substance use disorder services including behavioral health treatment; (6) prescription drugs; (7) rehabilitative and habilitative services and devices; (8) laboratory services; (9) preventive and wellness services and chronic disease management; and (10) pediatric services, including oral and vision care.
The Centers for Medicare & Medicaid Services (CMS) /Department of Health and?Human Services (HHS) reviewed and accepted the benchmark plan submitted by the state of Connecticut known as the ConnectiCare plan. The CMS record for the 2012 ACA’s accepted ConnectiCare benchmark plan states Lyme patients have the following essential health benefits:
> Lyme 'no limitations or restrictions on service'
> and note "Off-Label Use of FDA-approved prescription drugs for the treatment of certain types?of cancer or disabling or life-threatening chronic diseases"
See page 8 of Connecticut EHB Benchmark Plan
In 2021, this benchmark plan states that essential health benefits for Lyme patients includes “30 days of intravenous antibiotic therapy or 60 days of oral antibiotic therapy, or both; and [repeated treatment] further antibiotic treatment if it is recommended...” (see details below)
Lyme is recognized by the federal government as a public health threat that must be reported to the National Notifiable Diseases Surveillance System (NNDSS). ?The process of vetting and announcing these essential health benefits for Lyme has established the ACA’s legal protection of coverage for these extended treatments for a national public health threat.?This means the coverage of these established essential health benefits for Lyme are not limited to Connecticut nor to ConnectiCare.
In principle, this means all ACA-compliant plans must provide these essential health benefits of extended antimicrobials for persistent Lyme disease.
For example, Tricia T. describes how the ACA allowed her to access ACA-compliant insurance that covered the surgical insertion of a intravenous chest port to treat her Lyme-damaged heart and Lyme-compromised immune system. https://obamawhitehouse.archives.gov/blog/2014/12/29/faces-health-care-tricia-t
Does this mean that Lyme patients with persistent symptoms and infection will automatically be given these essential health benefits and extended treatment options?
Not necessarily, for the following reasons:
> You must have ACA-compliant insurance to benefit from ACA protections. https://healthcareinsider.com/what-are-the-aca-essential-health-benefits-210386
“The Affordable Care Act requires that certain health insurance plans include coverage for 10 “essential health benefits.” The requirements apply only to plans available in the Marketplace and to fully insured small group and individual plans. While self-insured and large-group plans are exempt from this requirement, most have also adopted the essential health benefits and share the cost of those benefits with their employees.”
All ACA-compliant plans in the individual and small group markets are required to cover the ACA’s essential health benefits without any caps on the total amount that the plan spends on your care. So they’ll provide a solid safety net if you end up needing significant medical care (although ACA-compliant large group plans are not required to cover the essential health benefits, most do so voluntarily in an effort to attract and retain employees). And all ACA-compliant plans are required to cover pre-existing conditions without any waiting periods.”
> Non ACA-compliant plans don’t have to cover the essential health benefits unless the state has its own requirements.?
Some states have laws that further uphold this ACA coverage and care, e.g. Massachusetts (see below) and other states do not. Why? In 2019, the legal protections extended by the ACA were undermined, e.g. if you live outside of California, Rhode Island, Massachusetts, New Jersey, or the District of Columbia insurance companies are not required to provide you ACA-compliant coverage.?
> The enforcement of the ACA varies from state to state. This results in many persons having to take up individual battles to secure their covered care under the ACA.
> Post Treatment Lyme Disease Syndrome (PTLDS) is routinely misused by insurance companies to deny ACA protections for extended antimicrobial treatment for persons living with Lyme infection.??
PTLDS is a term promoting an unverifiable psychosomatic illness theory of Medically Unexplained Symptoms (MUS). The concept of MUS has been thoroughly repudiated by the American Psychiatric Association and MUS was deleted from the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition. Nevertheless, PTLDS-based MUS is routinely misused by insurers to deny ongoing treatment. ??
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More details on the 2020 ConnectiCare plan
The 2020 ConnectiCare plan states: https://www.cms.gov/CCIIO/Resources/Data-Resources/ehb#Connecticut?
Lyme Disease Services. Medically Necessary treatment of Lyme Disease is covered as follows:?Up to a maximum of 30 days of intravenous antibiotic therapy or 60 days of oral antibiotic therapy, or both [90 days] ; and further antibiotic treatment if it is recommended by a board certified rheumatologist, by an?infectious disease specialist, or by a neurologist.??
https://www.connecticare.com/providers/our-policies/medical?
“I. Members with a confirmed Lyme disease diagnosis are eligible for an initial 4-week course of?intravenous (IV) antibiotic therapy when the following criteria are met; any:?
A. Lyme arthritis that persists after failing to respond to a 4-week course of appropriate oral antibiotic therapy
B. Lyme carditis —moderate to severe cardiac involvement as evidenced by any of the following: 1. 1st-degree heart block with P-R interval ≥ 300 milliseconds. 2. Myopericarditis, 3. 2nd- or higher degree atrio-ventricular block
C. Neurologic involvement of Lyme disease (neuroborreliosis) as evidenced by any of the following: 1. Encephalomyelitis, based on MRI imaging, CSF pleocytosis, and no other cause found 2. Meningitis confirmed by CSF analysis showing a lymphocytic pleocytosis. 3. Sensory/motor radiculoneuropathy or peripheral neuropathy (weakness and/or pain in the?extremities or chest)
D. All cases of Lyme disease in pregnant women who exhibit symptoms and signs of any of the?following: 1. Stage II Lyme disease with early dissemination documented by organ specific manifestations of?infection (arthritic, cardiac, or neurologic) 2. Stage III late Lyme disease documented by findings of arthritis and/or neurologic complications, such?as encephalomyelitis and subacute encephalitis
II. The following antibiotics constitute medically necessary IV therapy: A. Ceftriaxone (Rocephin?) B.?Cefotaxime (Claforan?) C. Penicillin G D. Azithromycin (Zithromax?) — for members intolerant to b lactam antibiotics?
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1 年I’ve been suffering 6 years. I’m in New Mexico. What if the doctors are inexperienced I’m chronic Lyme or refuse? Can I seek treatment out of state with my insurance??
PROPRIETOR/AUTHOR/WRITER/Publishing at D&L THOMAS BOOKS, Lyme and associated diseases advocate
3 年Many don't realize the ACA made previsions for Lyme diseases issues.
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3 年how does this translate in Vermont?
Freelance Consultant
3 年Let them know their rights and the duties of our medical care system!