Notes from 4/30/14 webinar on health insurance

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    Linda….thank you for attending this web conference. This important information will aid our patients in the crucial decisions regarding their health insurance.


    Thanks for posting this. My sister is on a ‘Covered California’ Blue Shield plan which is an ACA plan. Definitely brought her monthly premiums down by $1,000 a month. Now that she has been disabled permanently (gets SSDI) by cancer for almost 2 years, she is also eligible for Medicare but hasn’t had the energy to apply. I may need to figure this out and help her.


    Thank you Linda.


    On April 30, 2014, I attended a webinar sponsored by the Global Genes Project. Presenters were Larry LaMotte of the Immune Deficiency Foundation, Joel White of Horizon Government Affairs and James Romano of Patient Services Incorporated. The following is a summary of information presented.

    A study by Kaiser Family Foundation showed that 48% of people in the US had employer-provided health insurance, 5% had private market insurance, 16% had Medicaid, 15% had Medicare and 1% had other public insurance. About 15% of the people surveyed were uninsured but this figure will drop as a result of the Affordable Care Act.

    The Affordable Care Act (ACA).
    The ACA is the most sweeping health care program since Medicare went into effect 50 years ago. It is a highly contentious law and it will clearly produce winners and losers. The law requires uninsured individuals to buy coverage or pay a tax. (There are exemptions to this requirement.) Employers of 50 or more employees are required to provide affordable coverage to their employees or pay a tax. The open enrollment period ended March 31, 2014 and the next enrollment period will be November 15 – February 15, 2015. Changes to enrollment are available within 60 days after a major life event such as marriage, birth or adoption of a child, a move to another state, or certain changes in income. Acceptable plans under the ACA must provide essential health benefits in ten specified categories and must cap out of pocket expenses (currently $6350 for individual coverage). Annual and lifetime limits on benefits are no longer permitted and plans can no longer exclude people with pre-existing conditions. Children can now stay on their parent’s health insurance until the age of 26.

    Things to consider when selecting a plan.
    What are the costs of the plan? Consider premiums, co-payments, co-insurance, deductible, etc.
    What services are covered?
    Are your current doctors in the plan’s network?
    Are the specific treatments you need or may need in the future covered?
    Are the drugs you require covered under medical benefits or pharmacy benefits? (This is important because benefits may be different for the two categories.)
    If the drugs you require are covered by the pharmacy benefit, what “tier” are they in? If they are in a high tier, your out-of-pocket costs may be quite high.
    Does the plan require that you try a less expensive drug before it will approve a more expensive one that might be more effective?
    What are the co-payments or co-insurance for the treatments you need? Note that a co-payment is usually a fixed amount you pay for a specific service (e.g. $30 for a doctor’s visit). Co-insurance requires you to pay a percentage of the cost of the treatment. If the treatment is very expensive, the co-insurance requirement could make your costs very high (for example, if the treatment costs $10,000, a 30% co-insurance requirement would make your cost $3000 each time you have the treatment).

    How to get information about the plans you are considering.
    Take the time to read the plan summary.
    Obtain a list of providers covered by the plan.
    Anticipate what treatments and drugs you are likely to need and try to estimate your actual out-of-pocket costs under each plan.
    Write down all of your questions.
    If the insurance is provided by an employer, try to get your Human Resources department to help.
    If you are obtaining insurance under the ACA, try to obtain help from a navigator. (A place to start is
    Call the insurance company directly and be persistent until you find someone who can answer your questions. Be your own advocate.
    The Immune Deficiency Foundation has developed an insurance tool kit that may be helpful to people with other rare diseases. Find it at:

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