The VIP Chronic Patient at the Health Policy Table

Living with a chronic illness gives one a front row seat to the nation’s health care system. If that’s true, then living with three chronic illnesses certainly puts you in a VIP seat. Add to that being self-employed and I might as well be the guest of honor at the health reform table.

I may sound like a self-proclaimed expert, but doesn’t each person who learns to navigate her own challenges become an expert on what affects her choices in healthcare?

So what are my qualifications?

• Diagnosed with multiple sclerosis, rheumatoid arthritis, depression, and hypothyroidism.
• Self-employed person who is insured in the Individual Health Insurance Market.
• Self-proclaimed expert in finding all the holes of over eight Prescription Assistance Programs.

As a self-employed person, my choices are limited although I have obtained the very best coverage available to me from the largest health insurance company in the Washington, D.C., area (Carefirst BCBS). Due to living within the DC Beltway, I am not able to purchase insurance from the larger BCBS company which sells policies to residents of the remainder of Virginia.

Of course, we can't expect insurance companies to share territories. LOL. Additionally I am one of the relatively few persons in the nation who pay both employer/employee payroll taxes on the value of health insurance premiums. Lucky me.

It wasn’t until being diagnosed with multiple sclerosis in 2005 that I discovered the pitfalls in deceptively vague insurance policy wording which leaves me exposed to $30,000 in annual pharmaceutical costs of which insurance will only cover $1500. My original policy (which I do have in hardcopy) indicates that I would be covered at 90% after reaching that $1500 limit, but Carefirst has since “refined” the wording and I’m responsible for the full remaining cost.

If I had access to group health insurance, rather than relying on a policy from the individual insurance market, I would likely be much more protected from catastrophic costs than I currently am.

I was interviewed for the Winter 08/09 edition of Momentum Magazine published by the National Multiple Sclerosis Society. Below is an excerpt which focuses on the need to prepare the financial future - “Ensure my Insurance.” Crazy concept, really!! Please keep in mind that my insurance coverage was underwritten, thus much less costly than it would be otherwise with my multitude of pre-existing conditions.

Planning to put money where your future is: Insurance and Savings

For Lisa Emrich, $325 a month is a small price to pay for ensuring her insurance.

That's how much she spends now on her individual health insurance. As a self-employed musician and music teacher, she was shopping for a policy that would pay for her MS needs. [MS drugs, specifically] Insurance brokers advised her to hold onto her current insurance for dear life. So even though she could have been added to her boyfriend's insurance policy when the couple moved in together, she said she's unlikely to let her own insurance go. You know, just in case.

"It's sort of an insurance policy for an insurance policy," said Emrich, 40, who lives in Washington, D.C. "If anything did happen--if he changed jobs--paying an extra $325 a month might be a good investment."

Since her diagnosis in 2005, Emrich has made several other good investments: She opened a Self-Employed Pension account and an Individual Retirement Account.

She's lucky. She's always been a good saver. But even if you don't have that advantage, you should still think about how you can protect yourself financially. Some people with MS work without much interruption in their earning power for decades. For others, sudden symptom progression leaves them without work--and without health insurance. For everyone, financial planning is one of the most important tools to protect against the unpredictable.

I may sound jaded when it comes to health insurance, likely because I am. However, I do appreciate the 90% coverage I have for most other health care costs. Let me give you an example of how this works in the real world.

MS patients are often recommended to undergo annual MRI testing in order to monitor disease activity and effect of their disease-modifying treatment. I experienced a serious relapse of my MS last spring and spent an afternoon lounging in the MRI machine.

• My out-of-pocket cost for the MRI = $500.
• My out-of-pocket cost for the IVSM (5-day Intravenous Solumedrol treatment) = $200.
• Co-pays for six neurology appointments throughout the year = $150.

Add this to the year's medical expenses:

• Co-pays for four rheumatology appointments = $100.
• Co-pays for two primary care appointments = $50.
• Co-pays for a limit of 20 mental health appointments = $500.
• Any other mental health appointments are 100% out-of-pocket = ouch.
• Cost of co-pays and uncovered pharmaceutical costs = Don’t Even Ask!!!

However, I am one of the lucky ones. I do have health insurance coverage and wonderful doctors who provide excellent care.

What’s a little money when we’re talking personal health and the delay of disability?

• Health Insurance Premiums = $3900
• Tax on Insurance Premiums = ~$585
• Out-of-Pocket Medical Costs = $1500+
• Drug and Medical Deductibles = $200
• Co-pays for Covered Drugs = $500
• Co-pays for Generic Drugs = $315

• Cost to Qualify for Pharmaceutical Assistance = Earning below 200% FPL

So as a self-employed person who has 'decent' health insurance coverage, I spend $7000 or more on health-related costs each year. But I must also keep my income below 200% FPL in order the qualify for necessary pharmaceutical assistance in obtaining the remainder of that annual $30,000 maintenance drug expense.

What else is a musician, freelance writer, chronic illness patient, health policy enthusiast to do?

Welcome to the reality of the financial difficulties of living with chronic illness and being under-insured. This experience is priceless, especially when compared to examining health policy reform from the safety of an academic, think tank, or professional appointment.

It's time for expert chronic illness patients to speak up and have their concerns heard. The new Administration is listening so start talking!!!!