Introduction

See: Tell Us Your Story

My name is Lori Smith. I am a 38 year-old white female. I am college educated and I work full time in the graphic arts and advertising industry.

I am a premium-paying TennCare enrollee. I qualify for TennCare because I am uninsurable. I am uninsurable because I have Lupus (SLE) and Multiple Sclerosis.

TennCare reform will have a significant and potentially detrimental impact on me and thousands like me. I believe there are other ways to salvage the program and to achieve cost containment without cutting benefits and harming enrollees.

Before I discuss how this reform will impact me, I’d like to give a brief overview of lupus and multiple sclerosis.

Lupus

…      Lupus is a chronic (lifelong), progressive, unpredictable and potentially disabling autoimmune disease.

…      The immune system normally protects the body against viruses, bacteria, and other foreign materials. In lupus, the immune system loses its ability to tell the difference between foreign substances and its own cells and tissue. For unknown reasons, lupus causes the immune system to attack the body's own tissue and organs, including the joints, kidneys, heart, lungs, brain, blood, skin or central nervous system.

…      I am in the early stages of lupus and experience complications with kidney function and abnormal blood clotting, which puts me at greater risk of stroke.

Multiple Sclerosis

…      MS is a chronic, progressive, unpredictable and potentially disabling neurological disease that affects the central nervous system. (CNS).

…      The CNS consists of the brain, spinal cord, and the optic nerves. Surrounding and protecting the nerve fibers of the CNS is a fatty tissue called myelin, which helps nerve fibers conduct electrical impulses. Myelin not only protects nerve fibers, but makes their job possible. When myelin or the nerve fiber is destroyed or damaged, the ability of the nerves to conduct electrical impulses to and from the brain is disrupted, and this produces the various symptoms of MS. In MS, the body destroys its own myelin, leaving scar tissue called sclerosis

…      I am in the early stages of MS and have experienced complications such as loss of vision and loss of mobility. Currently, I have almost all vision and I am fully mobile.

There is no known cause and no cure for Lupus or MS, but drugs can help slow the course and/or symptoms in some patients.

Studies show that early treatment can lessen Lupus and MS disease activity and severity, but that if left untreated in the early stages, these diseases are more resistant and can accelerate more rapidly.

Both diseases require close and continuous monitoring.

Necessary to note: Having a compromised immune system predisposes me to contracting infections more easily and more often with longer recovery times. It is not uncommon for a simple ailment, such as a cold, to trigger an MS or lupus flare-up.

How TennCare Reform Will Affect Me

Several elements of TennCare reform will directly impact me. These are benefit limits, the safety net and the redefining of the term “medical necessity”.

I will focus primarily on benefit limitations, although the others pose just as great a threat. I have included a rough outline of my concerns and questions regarding the safety net and medical necessity.

(Interesting and worthy of mentioning is the fact that I have previously submitted this information to all state senators and representatives and to the governor. The only response I have received to date is an acknowledgment from one senator and the governor's office advising that my material had been received.

Additionally, I recently met with the Governor’s Commissioner of Finance. The same questions and concerns were shared, excluding medical necessity. I received only a vague acknowledgement with no discussion or answers being offered).

Under the TennCare reform, enrollees will be classified into groups. Depending on what group you fall under determines benefit limitations. I belong to the “able-bodied” class who is above poverty level. This means that I will pay a monthly premium, as well as co-pays for doctor visits and prescription drugs and I will be subjected to limited benefits.

Benefit Limitations

As an able-bodied enrollee, my benefits will be limited to:

a.     ten doctor visits/labs per year and;

b.     no more than six prescriptions per month.

            Regarding doctor/lab visits:

-       My lupus requires routine visits to a rheumatologist and having lab work every three to four months.

-       At least once a year I see an opthamologist because one of the medications I take can seriously damage my eyes and the MS has impaired my vision.

-       Once a year I routinely see a neurologist and have an MRI and other tests performed to monitor the progress of the disease.

-       Once a year I have a woman’s check up.

This already puts me at 6 to 7 doctor visits and 6 to 7 lab work-ups.

On June 8, 2004, I had my tenth doctor visit this year.

Necessary medical consults and treatments pending are:

-       Two routine visits to the rheumatologist including lab work.

-       A routine visit to the neurologist, including the need for an MRI.

-       Woman’s check-up

            Regarding medications:

-       I recently went from six prescriptions a month to five. Exceeding six prescriptions a month is not uncommon for me. Particularly if I am experiencing a Lupus or MS exacerbation.

-       The medicines I take help manage the diseases and help me to function and work full time.

The magnitude of eliminating/reducing benefits is substantial and the potential impact of being uninsured/underinsured is obvious:

1.     Costs of obtaining necessary care can be financially ruinous;

a.     While I could most likely afford a trip or two to my primary care provider and medication for something simple like a sinus infection, I would not be able to afford additional visits, labs, other testing and medications whether or not it was for a simple or major medical condition. Lupus and MS are major medical conditions and they are expensive to treat,

b.     My choices would be to use a credit card and go into debt or to not seek medical care.

2.     Delaying or forgoing needed care can lead to adverse health outcomes;

a.     For example: As a direct result of MS, I recently developed optic neuritis, which affected one eye and left me with partial vision. This is a manageable problem and permanent loss of vision can be avoided if treated quickly and aggressively. But treatment would consist of seeing a neurologist and an opthamologist, visual testing and large doses of steroids and other medications. Not having insurance, I could not afford to pay so I did not seek medical attention and hoped my condition would not worsen. Foolishly I waited. Luckily my condition improved, although I have not regained full vision. And it is quite possible that I never will.

b.     Without healthcare coverage and having a limited budget, I will forfeit certain medical attention so that in the event something “major” comes up, I will at least have a chance of being able to pay for part of it. Medical care that will be eliminated include my yearly pap smear and my routine doctor visits/labs for lupus and MS monitoring.

This poses a great threat, as many diseases including Lupus can develop and progress silently. By the time symptoms appear, the condition may be far advanced. And the further advanced the disease, the more likely it will carry an unfavorable prognosis. Moreover, treatment will cost more than if preventative medicine was practiced.

3.     Uninsured/underinsured patients are more likely to be admitted for preventable or avoidable conditions;

4.     Uninsured / underinsured patients have been found to receive fewer resources, testing and procedures than adequately insured patients;

This is true. I have had wonderful private insurance, no insurance and TennCare. The better the insurance, the better the treatment.

5.     Mortality and disability rates are higher.

The patients aren’t the only people effected. Providers of uncompensated care are forced to “cost shift” to other payers the expenses incurred by patients without adequate or no coverage.

Conclusion

By no means is this a complete list of the possible and likely repercussions I will face because of TennCare reform. I am scared and frustrated, and rightfully so. What happens to me after the reform is implemented on January 1, 2005 is unknown. But two things are certain:

Access to appropriate health care is paramount if I am to remain self supporting and able-bodied.

For as long as TennCare reform impedes my access to appropriate health care, I will struggle to cope with the consequences of this brutal reality.

EXAMPLE FOR DISCUSSION PURPOSES

For discussion purposes, I’d like to present an example specific to multiple sclerosis and apply it to each of the two topic areas (Medical Necessity and the Safety Net).

Magnetic Resonance Imaging ¹

Magnetic resonance imaging scans are important tools and are used for diagnosing multiple sclerosis, tracking changes over time, and helping to determine treatment effectiveness.

Making a Diagnosis.

Magnetic resonance imaging (MRI) scans can detect patches of injured tissue (lesions) that suggest MS.

Detecting New or Increasing Lesions.

Once diagnosed, periodic follow-up MRIs can be used to track the disease and effectiveness of treatments in two ways:

…      By distinguishing new lesions from old ones.

…      Revealing increasing or decreasing numbers of lesions within the central nervous system over time.

Detecting lesions before further symptoms appear may allow a physician to initiate early treatment that may prove beneficial. Many experts therefore now advocate performing a brain MRI as soon as symptoms appear.

¹     University of Maryland Medicine

      http://www.umm.edu/patiented/articles/what_tests_used_diagnose_multiple_sclerosis_000017_7.htm

MEDICAL NECESSITY

The proposed definition of medical necessity concerns me and prompts the following questions:

Would a yearly MRI, prescribed by a specialist for tracking changes over time and helping to determine treatment and or treatment effectiveness:

            Meet the proposed criteria?

and

            Be covered by TennCare?

PROPOSED DEFINITION OF MEDICAL NECESSITY IN SECTION 22 OF SB 3392:

(b)     To be determined to medically necessary, a medical item or service must satisfy EACH of the following criteria:

(1) It must be required in order to diagnose and treat an enrollee’s medical condition. The convenience of an enrollee, the enrollee’s family or a provider, shall not be a factor in determining whether a medical item or service is medically necessary

…      A neurologist could argue that this is required in order to treat. MRI’s are a credible way for doctors to monitor disease progress. This in turn helps them determine the course of treatment.

(2) It must be safe and effective. To qualify as safe and effective, the type and level of medical item or service must be consistent with the symptoms or diagnosis and treatment of the particular medical condition, and the reasonably anticipated medial benefits of the item or service outweigh the reasonably anticipated medical risks based on the enrollee’s condition and scientifically supported evidence;

(3) It must be the least costly alternative course of diagnosis or treatment that is adequate to address the medical condition of the enrollee. Where there are less costly alternative courses of diagnosis or treatment, including alternative settings, that are adequate to address the medical condition of the enrollee, more costly alternative courses of diagnosis or treatment are not medically necessary. An alternative course of diagnosis or treatment may include observation, lifestyle or behavioral changes, or where appropriate, no treatment at all. A determination that a course of diagnosis or treatment is adequate to address the medical needs of an enrollee need not be based upon the prevailing practice of any geographic area;

…      MRI’s are expensive, but they show what the naked eye can not see; lesions on the brain and spine.

…      Studies show that early treatment can lessen MS disease activity and severity, but that if MS is left untreated in the early stages, the disease is more resistant and can accelerate more rapidly.

…      If an MRI will help diagnose, monitor the course of disease, and help determine treatment and treatment effectiveness, there’s no sense in waiting for more disability and more attacks to occur.

…      By the administration’s proposed definition, it could be determined, even if contrary to my physician’s recommendations, that an MRI is not medically necessary.

(4) It must not be experimental or investigational. A medical item or service is experimental or investigational if there is inadequate empirically-based objective clinical scientific evidence of its safety and effectiveness for the particular use is question. This standard is not satisfied by a provider’s subjective clinical judgment on the safety and effectiveness of a medical item or service or by a reasonable medical or clinical hypothesis based on an extrapolation from use in another setting or from use in diagnosing or treating another condition.

…      Would an MRI in my instance be considered experimental or investigational?

(c) It is the responsibility of the bureau of TennCare ultimately to determine what services and items are medically necessary for the TennCare program. The fact that a provider has prescribed recommended or approved a medical item or service does not it itself, make such item or service medically necessary.

…      Who at the bureau of TennCare will be making this decision?

…      Is this person(s) a doctor?

…      A specialists in MS?

…      If the determination by the bureau is “not medically necessary,” will my physician have an opportunity to discuss his recommendation to the person(s) at the bureau who made the decision?

(d) Except to the extent that the bureau of TennCare establishes a different standard of medical necessity for a particular service or items or categories of services or items, the medical necessity standard set forth in this section shall govern the delivery of all services and items to all enrollees or classes of beneficiaries in the TennCare program.

SAFETY NET

While I’m pleased there will be a safety net, it falls seriously short of what many will need. The safety net is not designed to accommodate the ongoing and intricate needs of the chronically ill.

It is my understanding the safety net will operate as follows:

…      First come first served basis. When it’s gone, it’s gone.

-       There is no guarantee that one would qualify for assistance. Even if their medical condition was life-threatening.

…      Must go to a specified hospital or clinic (unknown at this time)

-       Will this be a different facility than where I normally go?

-       If so, may I elect to see my provider at his/her facility?

-       If not, will the treating physician(s) be specialists in my diseases?

…      Approval Process

-       How quickly will approval or denial be determined after applying for safety net services?

-       Lupus and MS exacerbations require immediate and aggressive treatment.

…      Appeals Process

-     No appeals process will exist or is planned to ever exist.

Repercussions:

Emergency Room Care

-       If I surpass my ten doctor visits and can’t get immediate help or any help from the safety net, I will have no other choice than to go to the emergency room.

-       This will not be cost effective.

-     Emergency room physicians do not have the expertise in understanding and treating Lupus and MS. This could pose significant risk.