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Rights and Responsibilities

Many local hemophilia chapters and state advocacy groups have information that can help you understand patient rights.

Here are some areas that these organizations can often help you with:

Health insurance

  • Obtaining and/or maintaining private health insurance
  • Obtaining coverage from insurers for medical treatment
  • Medicare and Medicaid
  • Applying for Social Security Income or Social Security Disability Insurance
  • Obtaining information on how small business can provide health insurance
  • Insurance issues related to transitioning young adults
  • State insurance assistance programs
  • Challenging denied insurance claims

Workplace issues

  • Legal rights of patients and their families in the workplace under the Americans with Disabilities Act and the Family Medical Leave Act

School issues

  • Legal rights under the Individuals with Disabilities Education Act or The Rehabilitation Act of 1973 Section 504
  • Maintain access to prescription drugs and medical treatments by providing information about protection under the Health Insurance Portability Accountability Act

What to Do if Your Claim Is Denied?

Any time an insurance company refuses to pay (called a denial or denied) for a visit to a health care provider, treatment, test, or procedure, the pressure of coping with an illness or injury is heightened. The denial can be made before the service is provided (for example, by refusing to authorize a service that a doctor has ordered) or after the service has been given.

Whether you’re covered by a private insurer, Medicaid, or Medicare: you can appeal denials. But, remember, the appeals process is governed by different regulations and rules (called grievance procedure). The process may differ by state or by insurance company. State laws cover some aspects of private appeals, while federal law covers others. State law may grant you additional protections, but this isn't always the case. Moreover, the appeals process for all people who have a group health plan may differ.

Several organizations are available to help guide people with bleeding disorders through the appeals process. And, several organizations and pharmaceutical companies offer co-pay assistance, coinsurance, temporary refills, free drug programs, or other patient assistance programs, to people with bleeding disorders.

Here are some organizations that can help you learn more about the appeals process:

Patient Advocate Foundation: a national, non-profit organization that serves as a liaison between patients and insurers, employer and/or creditors to resolve insurance, job retention, and/or debt crisis matters because of their diagnosis. The Patient Advocate Foundation helps safeguard patients through effective mediation, assuring access to care, maintenance of employment, and preservation of financial stability. To learn more, click here.

Families USA: a national nonprofit, nonpartisan organization that works to achieve high-quality, affordable health care. They work at the national, state, and community levels. To learn more, click here.

Health Symphony: provides comprehensive health insurance information on how to receive free health insurance quotes, obtain assistance on a claims appeal, useful health insurance definitions, assistance for a particular health insurance situation, or purchasing appeal letters and reports. The Web site also contains information about major health insurance plans. To learn more, click here.