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What Influences Coverage

The cost of maintaining health insurance is very expensive, but it is far less than the actual cost of care for bleeding disorders. People with hemophilia or other bleeding disorder must often rely on costly medications and supplies to manage their chronic, lifelong illness. For this reason, they and those who are financially responsible for them must be aware of situations that can affect their health insurance coverage. Anticipating any changes can help assure that adequate health care coverage continues.

Because insurance plans—whether private, state, or federal—vary widely, this section of Steps for Living briefly reviews several organizations that can help answer specific questions you may have.

How Personal Changes Can Affect Insurance Coverage

A change in life status usually creates the need for new health insurance.

Here are some examples of personal changes that can mean you need to review your insurance coverage and possibly obtain new coverage:

  • Change in student status (for example, graduation, attending school part-time, dropping out)
  • Reaching a prespecified age limit on an insurance policy
  • Change in work status (for example, working part time rather than full time, unemployment)
  • Getting married/divorced/death of a spouse
  • A change in disability status
  • A change in income (for Medicaid)

Under the federal Health Insurance Portability and Accountability Act (called HIPAA), it is easier for workers to move from job to job without the risk of being locked out of insurance or having to wait for coverage of preexisting medical conditions. The bill also prohibits insurers from discriminating against workers based on their or their dependent's medical history.

Unemployment and Insurance Coverage

Unemployment may also affect coverage. Unemployed individuals and those who lose their jobs do have options. State Medicaid programs can help. Many states have other programs for people with genetic disorders that are not tied to employment status. For example, in California, the Genetically Handicapped Persons Program assists both adults and children with certain types of genetic disorders, including hemophilia.

Some people with hemophilia, especially older or disabled individuals, receive assistance from federal or state programs such as Medicaid or Medicare. Some nonprofit organizations help people with chronic illnesses. You may also be eligible for financial benefits through Social Security Disability if you qualify.

To find out what resources might be available to you, speak with members of your or your child's hemophilia health care team. Your state might also have a hemophilia program that can help. You might also contact the National Hemophilia Foundation's (NHF) Information Resource Center, HANDI.

Here is a list of some organizations that help uninsured individuals with bleeding disorders and their children:

End of Coverage

Depending on the type of health insurance plan, coverage may end when certain milestones are reached.

Here are a few examples of when insurance coverage might end in various plans:

  • Employer health plans
    • Coverage of dependents varies according to plan. Effective on September 23, 2010, coverage for dependents under most group health plans ends when an individual turns 26 years old. (Effective January 1, 2014, this will be true for all group plans as part of the Affordable Care Act)
    • COBRA—the Consolidated Omnibus Budget Reconciliation Act of 1985—is a provision of the federal law requiring that certain employers permit laid-off workers and their dependents to remain on the employee health plan for a specified period, usually 18 months. Employees must pay the full cost of the premium, including the share formerly paid by the employer
  • Medicaid
    • When a child turns 19 years old, he/she will no longer be covered by Medicaid unless he or she qualifies under the definition of disabled
  • Individual insurance plans
    • An individual plan—generally obtained through a state-sponsored individual health plan and/or a state high-risk plan—will usually not be affected by personal changes; however, there are some exceptions (such as when a person becomes eligible for coverage under a group plan)
    • An individual plan purchased through the open market will generally not be effected by personal changes either

Remember, call your insurer and review your coverage. You can also review the current benefits booklet, the insurance policy online, or you can contact your employer's human resources department.

Health Care Reform

Another major factor that may affect health care is health care reform, known as the Patient Protection and Affordable Care Act (called PPACA). This federal statute was signed into law in March 2010. Some changes have already taken place; others will be phased in between now and 2014.

Here is the time line of significant changes that may affect people with bleeding disorders.

June 2010

  • Establishment of temporary national high-risk pools that will offer insurance for people with preexisting conditions, like hemophilia, who have been without insurance for at least 6 months. (Many states already had state high-risk pools, which have remained in effect and remain an option for people who are otherwise uninsurable)
  • These pools will be available until January 1, 2014. At that time, other options for insurance will become available.

September 2010

  • No child can be excluded from participation in a health plan due to a preexisting condition, such as hemophilia. This means that no healthcare plan can exclude coverage of your child because of his or her bleeding disorder
  • Young adults up to age 26 years can be covered as dependents under all health plans. If your child is younger than 26 years of age, you can include his or her coverage in your health plan until he or she is 26 years old
  • There are no lifetime limits for individual or group plans
  • Up through 2014, the US Department of Health and Human Services will determine restrictions on annual limits of coverage
  • Your carrier cannot cancel your health care policy due to higher use or a preexisting condition, except in cases of fraud. (This practice is generally referred to as rescission)

January 1, 2011

Insurance companies must spend on actual health care a minimum percentage of the premium dollars they collect from enrollees in their plan. If they do not spend this minimum percentage, which is 85% for large group plans and 80% for individual and small group plans, they must pay rebates to enrollees.


  • Health plans must eliminate all exclusions for preexisting conditions for adults
  • The waiting period for new policy coverage to be effective will be limited to 90 days for all plans
  • Annual limits on new and existing group plans will be prohibited
  • Medicaid eligibility will change: all uninsured individuals younger than age 65 years, except those without dependent children, who have incomes up to 133% of the federal poverty level will be eligible to receive Medicaid
  • Individuals with incomes between 133% and 400% of the federal poverty level purchasing their insurance through The Health Benefit Exchange will be eligible for premium and cost-sharing credits (called subsidies)
  • Most citizens and legal residents will be required to have health insurance or pay a tax penalty
  • Employers with at least 50 employees who do not offer insurance may face a tax penalty if an employee receives federal money to purchase health insurance
  • Individuals and small employers will be able to purchase insurance through state-based American Health Benefit Exchanges