HoG Handbook

Health Insurance


health insurance
Most people with bleeding disorders who have insurance are covered by their employers' group policies. The person with the bleeding disorder may be insured as the employee, the spouse of the employee, or the child of the employee. A group policy can cover someone with a bleeding disorder because their high health care costs are offset by the low costs of so many other people covered by the policy.

Most people with bleeding disorders who have insurance are covered by their employers' group policies.  The person with the bleeding disorder may be insured as the employee, the spouse of the employee, or the child of the employee.  A group policy can cover someone with hemophilia because his high health care costs are offset by the low costs of so many other people covered by the policy.

Anyone facing high bleeding disorder costs and applying for a new job should ask about group insurance benefits before accepting the job. You don’t have to tell why you are asking.

Be sure to sign up for group insurance when it is first offered. If you wait, a medical history may be required, or you may not be able to get the insurance. Also, keep any previous insurance active up until the point your new insurance starts.

If a person with a bleeding disorder does not have group health insurance through their employer, there are options for getting coverage:

  1. You may purchase health coverage through the Health Insurance Marketplace® if you live in the United States, are a U.S. citizen or national (must be lawfully present), and not incarcerated. All plans cover essential health benefits, pre-existing conditions, and preventive services. Pay attention to open enrollment periods on the Health Insurance Marketplace webpage. Based on income and other factors, many people may be eligible for an advanced premium tax credit (APTC) to lower monthly premium amounts. You can review important information or begin an application at www.healthcare.gov
  2. Enroll in Medicaid or CHIP. Medicaid and the Children’s Health Insurance Program (CHIP) provide free or low-cost health coverage to some low-income people, families and children, pregnant women, the elderly, and people with disabilities. To find out if you’re eligible and what plans would cost, begin a Marketplace application on healthcare.gov (link to: https://www.healthcare.gov/ ) Some states have expanded their Medicaid programs to cover all people below certain income levels. 
  3. If a parent’s/legal guardian’s health insurance plan covers dependents, you usually can be added to their plan and stay on it until you turn 26. Your parent can add you to their insurance during the plan’s yearly Open Enrollment Period or during a Special Enrollment Period (link: https://www.healthcare.gov/glossary/special-enrollment-period/). Your parent should check with the plan or their employer’s benefits department for more information.

Things to consider before accepting a new health insurance policy:


Coverage is a catch-all term that describes what services the insurance company will or will not pay for, how much the company will pay and the number of services it will allow. The amount and kind of medical coverage varies among insurance companies and policies. The company may pay only a certain percentage of the covered expenses or require you to pay a fixed amount for each service.  Some policies cover only hospital bills. Others cover both hospital bills and major medical costs such as doctors' office visits and medicines. Some include hemophilia medication as a prescription drug benefit, and others include it as a portion of major medical benefits. Be sure to consider things like the “maximum out-of-pocket.” This is the most money you will have to pay each year for deductibles. After you reach this amount, the insurance company will increase your coverage to 100%. Meaning, you will only have to pay your premium.

Pre-existing Condition Clauses

A pre-existing condition is a health problem you had before your new coverage began. Under the Affordable Care Act of 2010, health insurance companies cannot refuse coverage or charge you more just because you have a “pre-existing condition”.

Health insurers can no longer charge more or deny coverage to you or your child because of a pre-existing health condition like asthma, diabetes, or cancer, as well as pregnancy. They cannot limit benefits for any condition either. Once you have insurance, the insurance company can't refuse to cover treatment for your pre-existing condition.

The only exception to this is if you had a “grandfathered” health plan, which is an individual health insurance policy purchased on or before March 23, 2010. These plans weren’t sold through the Marketplace, but by insurance companies, agents, or brokers. They may not include some rights and protections provided under the Affordable Care Act.

Annual Limits and Lifetime Limits

Before the Patient Protection and Affordable Care Act was passed, many health insurance policies had lifetime limits or caps on the amount the policy would pay. It was not unusual for a person with a bleeding disorder to reach that cap. Lifetime limits are no longer allowed. However, health plans can put an annual dollar limit and a lifetime dollar limit on spending for health care services that are not considered essential health benefits. 


Insurance policies also include riders. These are additional rules which tell whether certain expenses are covered. You should know what riders are attached to the policy in order to be prepared for out-of-pocket expenses. Out-of-pocket expenses are the ones you are responsible for paying. For instance, some insurance companies will not pay for factor infusions done at home. This usually can be challenged. You can sometimes meet with the insurance agents to explain how certain coverage can benefit both you and the insurance company. Home care coverage has payoffs for both parties.  You will be more likely to treat bleeds right away if home care is covered. The insurance company will save money in the long run because early treatment prevents costly hospital visits later on.

Private Policy Costs

If an insurance company is willing to sell an individual or family policy, the cost of the policy may be very high. This is why it is wise to consider a Marketplace plan or find a job with a company offering this benefit.

Agent and Company Reputation

Anyone buying a personal health insurance policy should take care to buy from an honest agent. One way to check an agent's or company's reputation is to call the State Insurance Commissioner's Office. This agency handles reports of dishonest practices. Consider calling three or four insurance companies for quotes. This will allow you to compare prices, covered benefits, and statements about pre-existing health problems.

HMOs, PPOs, and Other Managed Care Plans

An HMO (Health Maintenance Organization) or a PPO (Preferred Provider Organization) is a type of health plan that utilizes a set network of doctors and other providers. You may not be allowed to see a doctor outside of the network or, if allowed, you will pay more. You must check this out because it is important that you receive care at a center specializing in bleeding disorders, like a HTC. These plans can specify how you will receive factor concentrate or other bleeding disorder medication and may even limit which brands to use.