There are a variety of resources available that can help you get the information and care you need that is specific to your disease. Healthfinder.gov is a good place to start to find reliable information about specific diseases. Many health organizations have resources that can help you ask the doctor questions about your specific condition. The Be Your Own Best Advocate eBook includes links to organizations with information on specific conditions, including the Arthritis Foundation, the Multiple Sclerosis Society, the American Cancer Society, the American Migraine Foundation and the National Psoriasis Foundation.
Even with the best preparation and a great care team, you may have difficulty getting access to the right treatment for you. There are many factors involved in determining how easy or hard it is to get access to the right treatment. These can include whether you have insurance, and if so, what type (Medicare, Medicaid or private insurance); who your healthcare provider is, where you live, and which medical condition(s) you have. Depending on the answers to these questions, there may be resources to help you gain access to the treatment you need. These can include pharmaceutical companies, nonprofit groups and state programs.
Many states have medication assistance programs. Often these programs are designed for the elderly, disabled or people in financial need. Some programs are for people with specific medical conditions such as end-stage kidney disease or HIV/AIDS. We have information on getting support for your health care, whether you are on Medicaid, Medicare, uninsured or “under-insured.”
If your insurance company denies your claim, you have rights to fight back. Your options include filing an appeal directly with the insurance company, requesting an outside review by an independent third party, or filing a complaint with the insurance commissioner or attorney general in your state. To appeal an insurance claim denial, follow these steps on page 24 of Patients Stand Up: Be Your Own Advocate eBook.
The National Institutes of Health has detailed information on clinical trials, including what you need to know if you are thinking about participating, what questions you should ask if you are offered a clinical trial, how you are protected if you do participate, and what happens after a clinical trial is completed. The government’s ClinicalTrials.gov website provides a comprehensive database of clinical trials in the United States and around the world. Their database is searchable by disease, location and study phase.
Some patient navigators work for community-based organizations, or work independently and are hired on a freelance basis directly by patients. Independent patient advocates may focus on one particular disease area, such as cancer. Others focus on billing and health insurance claims. They may help to coordinate care among several providers, accompany patients to medical appointments or sit with them in the hospital. Two resources for finding information about patient advocates are the National Association of Healthcare Advocacy, which requires members to sign a code of ethics, and the Alliance of Professional Health Advocates, which requires participants to have professional liability insurance.