Dear Addy,

I keep seeing reminders about open enrollment beginning November 1, 2019. As a person with a bleeding disorder, what should I look for in an insurance plan?


Investigating Insurance

Dear Investigator,

The聽Open Enrollment Period聽is a time frame each year when health insurance plans or聽HMOs (health maintenance organizations)聽are required by law to accept applications from聽new plan聽enrollees regardless of their health history. This also is the time when you can choose to stay with your existing health plan if it is the right one for you.

Open enrollment is typically is held annually in the fall.聽 The exact dates vary depending on whether you get your insurance coverage from your workplace, an Affordable Care Act (ACA) Marketplace, or another source.

Scope of Coverage: When reviewing potential health plans (and when considering whether to renew your existing plan), it is important to聽review all plan provisions carefully. You will want to closely read the 鈥済eneral provisions鈥 (length of policy, types of providers you can see, term definitions), the 鈥渄rug provision鈥 (is your factor product, and any other drugs you need, covered by the plan), and the provisions that describe claims and the payment of claims. The ACA requires that plans spell out insurance terms in easily understood language.

After reviewing any potential plan, you should be able to answer the following questions:

  • What is the overall annual deductible?
  • Are there separate deductibles for specific services?
  • What is the annual out-of-pocket limit on my expenses?
  • What is not included in the out-of-pocket limit?
  • Is there an overall annual limit on what the plan pays?
  • Does the plan use a network of providers? Are my key providers (hematologist, specialty pharmacy, etc.) in-network?
  • What do I pay for out-of-network care?
  • Do I need a referral to see a specialist?
  • Are there any services the plan doesn鈥檛 cover?
  • Does the plan use a preferred drug list and, if so, will my product of choice be covered?
  • Is my product covered under the pharmacy benefit or under the medical benefit?

If you cannot answer these questions, contact your company鈥檚 human resources department, your HTC social worker, or an ACA Marketplace navigator (if you are selecting a plan via the Marketplace.)

Timing: If you get insurance through your job, check with your human resources department to find out when your company鈥檚 open enrollment period begins and ends. If you get your health insurance through the ACA Marketplace, please note that in most states the 2020 open enrollment period will run only from Nov. 1, 2019, to Dec. 15, 2019.聽 However, 13 states operate their own ACA Marketplace and seven have extended these deadlines. Click here for the deadlines in those states.

For people with聽Medicare聽coverage, open enrollment runs from聽Oct. 15 鈥 Dec. 7, annually.聽The open enrollment period for聽Medicaid聽is 365 days a year, available to those who need it, whenever that occurs.

Special Considerations for 2020 Plan Year: As you approach open enrollment this year, it is more crucial than ever that you carefully research your options and聽DO NOT simply auto-renew your existing insurance plan.聽Decisions made in Washington, DC, in the past couple of years are having complicated effects on insurance costs, so you will have to take extra care to evaluate your options to pick the plan that offers you the best and most affordable coverage.

  • Additional insurers are joining the ACA Marketplaces in many states. You may have new options for 2020 that you did not have last year.
  • Premium subsidies for purchasers of ACA Marketplaces plans will be lower in some states, higher in others, based on overall market conditions and on whether new insurers are entering the particular market. In order to avoid an increase in the share of the premium that you pay, you may have to switch plans.
  • If you buy your insurance in the individual market聽AND you earn too much to be eligible for premium subsidies, you may want to broaden your search to include non-Marketplace plans.聽 These plans have to meet ACA requirements for coverage, out-of-pocket exposure, etc., but may in some cases have lower premiums than Marketplace plans.
    • But BEWARE 鈥 a new federal rule has expanded the availability of so-called 鈥渟hort-term, limited duration health plans.鈥 These short-term plans do NOT provide adequate coverage for people with bleeding disorders. Short-term plans can turn you down based on your health condition, or refuse to cover your bleeding disorder, and typically don鈥檛 cover prescription drugs. You can learn more about the drawbacks of short-term plans聽here.
  • Watch out for plan limits on your ability to make use of manufacturer co-pay assistance programs. 鈥淎ccumulator adjuster programs鈥 are new strategies that are starting to crop up in insurance plans. Under an accumulator adjuster program, the health plan accepts manufacturer-provided co-pay assistance聽but does not credit that amount toward the patient鈥檚 overall deductible or out-of-pocket maximum.聽As this聽infographic聽illustrates, the use of an accumulator adjuster can create huge financial burdens for patients and their families, leaving them on the hook for out-of-pocket costs up to their yearly maximum. Unfortunately, it can be hard to spot whether your plan contains an accumulator adjuster, since these provisions appear under a variety of (sometimes misleading) names. Read carefully and keep pressing for answers.

A reliable resource for information on open enrollment for 2020 individual insurance plans can be found聽here聽and a detailed set of FAQs (including many in Spanish) can be found聽here.

Please be an active participant as you consider your insurance options for 2020! And whether you choose to keep your current health insurance or to enroll in a new plan,聽READ YOUR POLICY. This is critical because the health insurance plan you choose will be yours for 12 months unless you have a聽qualifying life event聽that allows you to switch plans.



Have a question? Click聽HERE. Your name will be changed in the response.

HFA frequently receives questions from the bleeding disorders community related to advocacy issues. The questions often impact the entire community. In an effort to reach the largest audience possible with our responses to these widely applicable questions, HFA developed 鈥淒ear Addy.鈥 Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance.


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