This week, I answer questions from readers concerned about health insurance roadblocks in the face of a serious illness or medical crisis.
Q: I think genetic testing could be a great tool for physicians. My fear is what the insurance industry will do with the information, especially in todayâs political climate. Could they decide that you have a preexisting condition and charge a higher rate, or not cover you at all?
No, they canât do that â not now, anyway. Under the (GINA) of 2008, health insurers canât use your genetic information, including your family medical history, genetic test results and genetic counseling or other genetic services, to discriminate against you.
That means health insurers canât use your genetic information when making decisions about your eligibility for health insurance, coverage terms or how much youâll pay.
If you develop symptoms of a disease or are diagnosed with a medical condition, however, GINA no longer protects you. Thatâs where the Affordable Care Act steps in. It prohibits health plans from turning people down or charging them more because they have a preexisting condition.
âGINA did something good, and the ACA was the next important step,â said , a law professor at George Washington University who specializes in genetics and the law.
However, last month the Trump administration said it wonât defend that part of the law, which is being challenged in a lawsuit brought by the attorneys general of 20 states.
The administration said that since the penalty for not having health insurance has been eliminated starting in 2019, the provisions that guarantee coverage to people with preexisting conditions and prohibit insurers from charging them higher premiums should be struck down as well.
The issue is a priority with voters. In a June by the Kaiser Family Foundation, two-thirds of voters said that continuing protections for people with preexisting conditions was either the single most important factor or very important in their vote during the elections this fall. (Kaiser Health News is an editorially independent program of the foundation.)
Q: My husband fainted in the middle of the night. He received an MRI at a hospital emergency department in Kingston, N.Y., that is not in our insurance network.
Two months later, we received a bill for $23,657.39. Our insurance company paid $3,226.40, or 90 percent of what they considered to be a cost for the services provided. Our bill was for the balance.
Even though New York has a law that protects consumers against surprise medical bills, I learned that it doesnât apply to us because our health plan is âself-funded.â Is there anything else that we can do?
Youâre in a tough spot. The ACA prohibits most plans from charging consumers more in copayments and coinsurance for out-of-network than theyâd owe if they were at an in-network facility.
But federal law doesnât prevent out-of-network providers from billing consumers for the balance when a health plan doesnât pay in full. This can happen because the plan doesnât have negotiated rates with providers that arenât in the network.
New York is one of six states that have laws with comprehensive protection for consumers against so-called surprise bills, according to an by researchers at Georgetown Universityâs Health Policy Institute that was published by the Commonwealth Fund last year.
The others are California, Connecticut, Florida, Illinois and Maryland. Another 15 states have limited consumer protections in this area.
But self-funded plans such as yours, in which your employer pays medical claims directly instead of buying an insurance policy for that purpose, are exempt from this type of state regulation.
In this circumstance, your companyâs human resources department may be your best bet, said Jack Hoadley, research professor emeritus at Georgetownâs Health Policy Institute, who co-authored the Commonwealth analysis.
âThe employer may say, âI feel an obligation to my employee and weâll cover this,ââ he said. âBut they can choose not to do that.â
Q: My wife has been taking Avonex for multiple sclerosis for 20 years. Our health planâs coverage changed this year, but Express Scripts, which manages our pharmacy benefit, didnât communicate the change until after it took effect. They mailed us a monthâs worth of Avonex in February, and a few weeks later we received an invoice for $6,000. Express Scripts would not let us return the medicine for a refund. They said that they explained we would be billed that amount when they called to remind us we were due for a refill, but thatâs not true. Do we have any recourse?
There is no easy answer for you. If you go to a brick-and-mortar pharmacy to pick up a prescription and you think the cost is too high, you can refuse the medication at the counter and walk away. But thatâs not generally possible with a mail-order prescription. Once it arrives, itâs yours.
âThe chain of custody is broken,â said Jennifer Luddy, a spokeswoman for Express Scripts, which manages the pharmacy benefits for companies and insurers. âWe donât know if itâs been opened or tampered with.â
Luddy said that typically employers communicate changes to workersâ pharmacy benefits for the upcoming year during the annual open-enrollment period. On an ongoing basis, drug copayment information is also available through the Express Scriptsâ website, mobile app or by phone, she said.
However, there may be other factors to consider, say patient advocates. For example, about half of people with multiple sclerosis have cognitive problems, said Bari Talente, executive vice president of advocacy at the National Multiple Sclerosis Society.
âPeople need to make sure that the person whoâs taking the drug really understands that the cost is changing,â Talente said.
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