Please seek your doctor for medical advice. Never rely on information on this website in place of seeking professional medical advice. Ask your physician for the information to your individual case.

Those affected by Sickle cell disease and sickle cell trait need to understand health and disability insurance. This is an overview of things you need to know under current laws. To learn more, consult with those knowledgeable about insurance matters. If you are working, talk with your employer’s benefits coordinator and the insurer.

There are often changes in how people in the United States receive health care coverage. Some of these changes may benefit people affected by Sickle cell disease or sickle cell trait. To learn more and stay up to date, visit Also, the Dallas sickle cell organization offers guidance about insurance and other sickle cell disease and sickle cell trait related issues.

If You Have Health Insurance

Read your policy to learn what is covered and not covered. For example, many insurance plans require that you contact them to get specific medical services pre-approved. This means that your health care provider’s office should contact the insurer before sending you for tests or other treatment.Talk with the insurer to get answers to your questions. You also need to understand what the plan requires. For example, there may be certain limits on when you are allowed to submit insurance claims or to appeal claim denials.

If you do not have a copy of your insurance policy, ask the insurer for another. You do not have to tell the insurer about your sickle cell diagnosis at the time you request the copy.

***Follow all of the insurance plan’s rules***

Make a list of all your current health care needs. Include services and treatments that you may need in the future. Compare your health plan benefits to expected medical needs. This will help you decide whether you already have the coverage that you need.

If You Don’t Have Health Insurance

Begin to look for ways to find coverage if you have concerns about having no health insurance. Check out options such as:

  • Group insurance through a union or as a member of another group.
  • An individual health insurance policy that you buy for yourself.
  • Federal or state benefit programs that are based on your income and disability.
  • Services through county, community and hospital programs.
  • Insurance coverage under the health plan of a loved one.
  • A new job that offers group health coverage.
  • The insurance options finder tool at

Laws that Affect Health Insurance Coverage

Be sure to keep your health insurance if you have it. If you lose your insurance, it may take time or cost more to purchase another health policy. Three important laws affect health insurance coverage.

Affordable Care Act of 2010 puts health insurance reform into effect over a period of years.

The following changes in insurance coverage may help people affected by Sickle cell disease:

  • Private insurance companies cannot deny coverage to children (under age 19) with pre-existing conditions.
  • Health plans cannot drop a person from coverage when they become sick.
  • No lifetime dollar limits on coverage through individual and group health insurance plans.
  • Young adults can be covered under a parent’s insurance policy until they reach age 26.
  • Seniors with Medicare benefits to receive discounts on brand drugs by 2013. The coverage gap will be closed completely by 2020.
  • High-risk insurance pools set up in every state to provide coverage for the uninsured.
  • Medicare and new private health plans will cover preventive services with no co-pays and deductibles.

For more information and updates about the Affordable Care Act, visit

How to Find Out About High-Risk Pool Coverage

  • Contact the National Association of Health Underwriters for a consumer guide to high-risk insurance coverage.
  • If you decide to apply for high-risk coverage, follow the directions exactly as they are given.
  • Be prepared to submit proof that you have been unable to get insurance coverage.
  • Keep Copies of all medical bills, claims and decisions of the insurer.
  • Follow up with the health care provider and the insurer.
  • Make certain that claim forms and appeals are sent and received on time.

Consolidated Omnibus Budget Reconciliation Act of 1986 (COBRA) is a federal law that provides the right to continue health benefits for a certain amount of time after leaving a job. The former employee must sign up within a certain time frame and pay the full premium amounts. It also applies to loved ones who were covered by the employee’s health insurance plan.

If you know that you will be leaving your job:

  • Talk with your employer’s benefits department. Find out how and when leaving your job will affect your health benefits.
  • Learn about the COBRA coverage that will be offered when you leave your employer. Ask how much it will cost.
  • Find out about the dates for signing up and for making payments. Pay the full amount on time every month.
  • Ask when COBRA payments will start and how long the health benefits will last.
  • If needed, ask if you can get insurance benefits beyond the initial COBRA coverage period. Some plans allow this in certain cases.
  • Find out if your state offers insurance programs or other ways to keep your health insurance after COBRA.

Health Insurance Portability and Accountability Act of 1996 (HIPAA) is a federal law. It protects those covered by group health insurance plans. It limits the length of time a group plan insurer can refuse to cover pre-existing health conditions. It also protects personal privacy.

Under HIPAA, you may be able to keep health coverage if you go from one group plan to another. For example, if you change employers, the new group plan must cover a pre-existing medical condition without an exclusion period if:

  • You have had health insurance with no gaps in coverage for longer than 63 days and
  • You have had health insurance for at least the previous 12 months
  • HIPAA does not protect the coverage provided by individual health plans. If you try to change to a different individual plan, the new insurer can legally turn you down.
  • Some states have health insurance protection laws that are similar to federal laws. Check to see if your state has laws that can help you get or keep health coverage.

Read more about HIPAA protections at

Disability Income Insurance

Group and individual disability income plans provide benefits if you are not able to work. There are two types of disability policies:

1. Short-term policies pay a weekly income benefit for a short period, such as up to two years.

  • Some employers offer short-term disability insurance. The income benefits start soon after you cannot work. They may continue until long-term benefits start. Even if you become unable to work, pay the full insurance premium on time.
  • Keep paying until you get a written notice to stop.
  • If you do not pay, the insurer will cancel your policy.

2. Long-term policies pay income benefits for the time specified by the policy. This could be as long as the rest of a person’s life. It might be up to the age when a person can retire (65 or 67).

  • Long-term benefits continue as long as you are disabled.
  • The insurer will review your case regularly.
  • Benefits will stop if you go back to work.
  • Benefits will also end if a health care provider informs the insurer that you are no longer disabled.

Dealing With Insurance and Benefit Claim Denials

  • Always look into insurance and benefit claim denials. If you are denied benefits, you may need to appeal the insurer’s decision. An appeal must be filed within the time allowed by the insurer.
  • You or someone else may have to advocate or fight for your rights. Ask the insurer to answer your questions about the denial decision. Use all of your appeal options. If you believe that a claim denial is unfair, contact an advocacy organization for help such as:
  • Your state insurance commissioner’s office. Contact the National Association of Insurance Commissioners (NAIC) to get connected with your state insurance commissioner.
  • As you go through treatment, you will need to share information with insurers and health care providers. If you are not feeling well enough to do this, ask someone you trust to help. He or she can keep track of insurance applications, claims, payments, denials and appeals. Your health care provider can also refer you to a social worker for help.
  • If you have questions about an insurance denial, an appeal or your rights, you can contact the Employee Benefits Security Administration. They are part of the U.S. Department of Labor and will offer free, confidential assistance.
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