RARE Young Adults Healthcare Guide

There are two main methods of finding health insurance: private and public.

Private health insurance plans are provided by companies in the health insurance industry. Public health insurance plans are provided by the U.S. federal government and often administered by state governments. Both categories include different options, depending on your individual situation.

You may seek out a private plan in a variety of ways.

• Many plans are employer-sponsored. You may obtain one as an individual employee, or you may be covered under one of your parents’ employer-sponsored plans until you turn 26, under the provisions of the Affordable Care Act (ACA).
  • In limited situations, you may be eligible to continue your health insurance for a fixed time period after leaving employment via COBRA.
  • Learn more about transferring off your parents’ insurance plan, including state-by-state policies that may allow you to extend your coverage past turning 26, here.
    
• You may seek out marketplace plans for individuals or families.
  • Marketplace plans are designed to improve access for working class and middle class Americans who may not qualify for public insurance but have financial difficulties affording private insurance.
  • Depending on the number of members living in your household and your annual income, you may qualify for government-provided subsidies to help you afford your marketplace plan.
    
• You may seek out individual or family plans purchased directly from health insurance companies.

Several public insurance options also exist.

• Medicaid is administered on a state-by-state basis and provides coverage for Americans primarily based on income status and disability level. You can find basic information on Medicaid and eligibility here.
  • Some states offer additional Medicaid waiver programs based on your diagnosis and symptoms. Search your state’s Medicaid website or call the state agency for more information.

• Medicare primarily covers Americans aged 65 and older, but you may qualify with certain disabilities at a younger age. You can check whether you qualify here.

• Other public insurance programs, including the Children’s Health Insurance Program (CHIP) or Tricare, cover select populations.

Depending on your rare disease and healthcare needs, you may want to purchase additional insurance, such as vision or dental, for services that are not typically included in a basic health insurance plan.

Many organizations have additional resources to help you understand your health insurance options. Check with patient and advocacy organizations relevant to your rare disease community for more information.

• You can find more information on insurance basics, especially the wide range of private plan types, in this guide from the Cystic Fibrosis Foundation.
• You can find additional, comprehensive information about how to understand and navigate your health insurance options in this Global Genes guide, which also breaks down subparts of the health insurance process and offers a glossary of common terms.
• If you would like an introductory overview of health insurance, including Medicare, Medicaid, and the ACA, from another young adult, we have a former YARR Summer Series webinar recording.

Federal and state laws impact when you need to seek your own insurance plan independent of your parents.

The Affordable Care Act is the federal legislation allowing young adults to stay on a parent’s insurance plan until 26. You can continue to receive coverage via a parent’s employer-provided or Marketplace plan even if you are no longer a student, you are married, or you choose not to accept your own employer-provided health insurance option. Depending on the type of healthcare coverage you have, you will need to seek your own plan after you turn 26.

Some states will allow young adults to remain on a parent’s insurance plan beyond 26. Make sure to review your state’s laws to see if an extension is possible and what may be required of you to receive an extension.

The overall process of switching to your own insurance plan, finding adult medical care instead of pediatric teams, and beginning to access healthcare as a legally independent adult is called transition.

This process of transition is an opportunity to openly assess your needs and choose a plan suited to the healthcare you will need as you age as a young adult with a rare disease.

Parent Project Muscular Dystrophy has a set of resources on Transition of Care Through Adulthood designed for individuals with Duchenne muscular dystrophy and their families, which may aid other rare disease patient advocates and their families in transition planning.

• This printable transition checklist details specific subparts of the transition process, including healthcare and health plans, that can help guide the details of your transition.
• Global Genes also has an extensive guide on navitgating the U.S. health system for young adults.

Your insurer must provide you with a summary of benefits and coverage, and you can assess available documents to choose between plans.

You can find more legal information here on what a summary of benefits and coverage entails and see a sample document.

• This Q&A also goes through what details are included in a summary of benefits and coverage and why it matters to you as a patient advocate.
• Global Genes also has an extensive guide on navitgating the U.S. health system for young adults.

Health insurance plans may offer supplemental benefits, community health, and consumer assistance programs if you qualify. Check their websites regularly for updated information or ask about additional programs when communicating with administrative staff about your plan.

If you use out-of-state care or telehealth options, make sure to check your summary of benefits and coverage for how those options may be covered differently, and communicate directly with your insurance provider for any follow-up questions.

• This presentation compares ongoing telehealth policy proposals at the federal level based on how well they align with rare disease community priorities.

Use your physical health insurance card as your first resource.

Check the printed phone numbers (usually listed on the back). If you doubt which one is correct to begin, start with the general customer service line.

The website of your particular health insurance plan will also have contact resources and phone number(s). Make sure you are navigating to the webpage as specific as possible for your plan.

• Make sure to have your plan number and additional details handy for any questions an administrative representative may have.
• Many insurance providers have additional communication options including live chat or email available through their websites.

If you are rerouted to a more specific department, write down the name of the person you speak with.

Also write down their phone number and extension, and their area of expertise. That way, you can keep a list of who to call in the future if another situation arises. This can also help you receive more personal and direct responses.

• If speaking on the phone is not the most accessible contact method for you, ask the insurance representative for their contact email as well as phone number.

Communicating effectively with your insurance provider can involve speaking their lingo.

The health insurance landscape has its own terminology for many services. You can find more definitions via the Healthcare.gov glossary.

Ask for copies of the company’s policies when you need to complete new information.

Insurers often have detailed procedures for how they accept forms and what information they require, so as much as you can, ask in advance. Check all information, including what your doctor may have provided, so that everyone has what they need to get you care and coverage.

You can find more information on navigating all the complexities of health insurance, including sample letters to help you access needed treatments and equipment, in this Parent Project Muscular Dystrophy guide.

You can also find more information about understanding and navigating the insurance appeals process in this guide.

Following any hospital-based treatment, you can contact the hospital’s administrators and request an itemized bill.

Federal policies protect your legal right to ask for an itemized bill. Cross-reference the costs on an itemized bill with your summary of benefits and coverage to make sure everything is balanced, especially if you have primary and secondary insurance providers who may each be covering different services.

• The Centers for Medicare & Medicaid Services have additional information available on hospital price transparency.

Check how the hospital system coded the services you received and the condition for which you received them using our ICD Code Roadmap. As it says in the Roadmap, “The way these codes are combined can affect whether and how much an insurance company or other payer will reimburse for that encounter.” Communicate with your health provider and insurance company if updates are needed so they can properly code your information and support you as a patient.

Hospitals and other organizations have resources to support you.

Ask your hospital’s billing office about their income caps and patient assistance programs. You can also check your health insurer’s website for additional financial assistance programs.

• The National Consumer Law Center has a guide on additional options for reducing hospital bills for lower-income patients.
• You can search for medical debt reduction organizations and/or medical-legal partnerships to assist you in addressing previous, accumulated bills.
  

Patient assistance programs are available for a wider array of healthcare costs.

These programs may cover co-pays for appointments and services, medication costs, durable medical equipment, and more.

• Patient organizations specific to your disease community may offer assistance programs. If you do not know which patient organizations focus on your condition, you can search for information at the NIH Genetic and Rare Diseases Information Center (GARD).
• Some national nonprofit organizations provide assistance to patients with certain diagnoses, prescribed certain medications, or seeking certain medical equipment.
• Pharmaceutical companies frequently have patient assistance and discounted medication programs that you can find online in their community engagement resources.
  

The RARE Foundation’s Patient Engagement team maintains a Resources page on our website with some financial assistance options for rare disease community members. Reach out to the Patient Engagement team if you have additional or individual questions.

Many RARE Young Adults have found success in keeping clean, organized records of their own that they can bring into each new appointment.

Compiling everything in one easy place provides both you and your healthcare provider with the most information possible to collaborate on your care. You can find more advice on maintaining your records here.

• Global Genes also has a toolkit for building a “care notebook” as a guardian or patient advocate.

Make sure to check whether organizations you trust offer additional guidance specific to your condition. Some may have advice on which lab values, symptoms, or other measurements to track. You can see one example via the Alport Syndrome Foundation.

Remember: You and your provider form a team.

You bring critical information about living with your condition, and your provider brings critical expertise and guidance. Together, you can collaborate to find the best treatment plan possible for you.

At some point in your transition, you may need to seek a new primary care physician.

This may include transferring from your pediatrician to an adult care provider while keeping your rare disease treatment plan intact.

• Ask your current pediatrician or primary care physician if they have any recommendations for new providers.
• Use your health insurance provider’s online tools and directories to find new doctors covered under your plan.
• Ask members of your local patient organization, advocacy organization, or support group, as well as friends and family members who share your diagnosis, which providers they recommend.
• You can find more tips on finding and transitioning to adult providers in these FAQs.
  

Before choosing a new provider of any kind, research their professional histories.

You can typically find information on the website of the health center or office where they practice, as well as in any online professional biographies, such as from conferences, associations, or professional societies.

• You can find providers’ specialties, education history, and key experiences. This will help you determine if the provider is suited for your condition and specific needs.

Before making an appointment with a new provider, check your insurance plan’s formulary or contact offices’ administrative staff to ensure that provider is covered by your insurance plan.

Typically your primary care physician will refer you to the appropriate specialist for your rare disease and symptoms.

You can also use the Genetic and Rare Diseases Information Center (GARD) from the NIH for information on which specialists are typically most informed about your condition and how you may begin to search effectively for one.

Your patient or advocacy organization may recommend additional questions.

You can ask questions to a new provider’s administrative staff before scheduling an appointment.

You will sometimes face a waiting period before a new specialist has availability.

Keep your existing healthcare moving while in that waiting period. Continue seeing your other providers and keeping your records and treatment plans up to date so that you are as prepared and solid as possible when you do see the new specialist. You are building a team, with care over time.

You want to have clear information going into each new appointment so that you and your provider can determine the most effective next steps.

Thinking through your recent symptoms, lifestyle, and needs will help you determine which options suit you best and which follow-up questions to ask.

You can prepare questions in advance to ask your provider.

If this is your first visit with this provider, consider asking questions that allow you to assess how invested they will be in your care. You can build a team with providers interested in supporting you. These questions may include:

• “Have you ever treated someone with my condition? If not, are you open to reviewing some information that I send you or talking with my past providers?”
• “How do you like to communicate with patients?”
• “When treating new patients, is your typical approach more holistic or do you like to just tackle one symptom at a time?”

If a provider recommends a new treatment option, you may consider asking:

• “What side effects can I expect from this new treatment?”
• “Will this treatment interact with any medications I am currently taking?”
  • This is also a question you can ask your pharmacist, who often specializes in these concerns, when you pick up a new prescription.
  • This guide from the Agency for Healthcare Research and Quality (AHRQ) details additional questions you can ask to help prevent medical errors.
• “Are there any over-the-counter medications or supplements I should take, or ones that I should avoid taking?”
• “Are there any new clinical trials I should consider? If so, where can I find more information about the risks and potential benefits?”
  

Before the end of the appointment, you may consider asking:

• “Is there anything else you recommend treatment-wise before my next appointment?”
• “When would you recommend another appointment?”
• “Do you recommend other resources or patient support groups?”
  • This is also a question you can ask the office’s administrative staff, who may have resources and community organizations to recommend.
    

Sometimes an appointment will not proceed as expected.

A provider’s understanding of your condition and treatment goals may not align with your own. It is important to remember that you can politely but firmly re-explain your condition if needed, and you can seek out providers willing to prioritize successful communication and teamwork.

You will want to consider other logistics before your appointment.

Plan how you will get to the provider’s office, allowing extra time before the appointment’s official time to fill out any necessary paperwork. You can call the office ahead of time to determine how early to arrive. You may also want to plan how you will dress and prepare anything else you are bringing with you (such as your own organized records).

If you are undiagnosed or partially diagnosed, you can find additional guidance from Global Genes on navigating appointments during your diagnostic odyssey.

You deserve to feel respected by your medical providers and trust their ability to offer the best care to you.

Sometimes you can mend relationships with your providers by purposefully emphasizing how much you value communication and mutual trust. YARR member Ella Balasa details one such story in this article.

Other times, it will become clear that a provider is not willing to listen when you share your experiences with rare disease. In those cases, as much as possible under your health insurance plan, you can seek a second opinion from another provider. There are providers who can extend more meaningful support to you.

If a provider recommends against new diagnostic testing or treatment options, you can ask them to document their decision in your medical records.

This will allow the provider either to explain in more detail why they are recommending against certain services or to reassess in conversation with you if those services may be worthwhile. This will also maintain a documented history of your medical care in case you develop new symptoms or need to share information with new providers.

If you are choosing to leave a provider’s office, give feedback to their administrative staff on what they could’ve done differently.

This allows you to share some of your experiences and hopefully improve the care that future patients will receive.

You can also provide ongoing feedback to your providers’ offices about what they do well and what you may want to see more.

Seek out surveys, feedback forms, and opportunities to talk with administrative staff.

In rare instances, you may feel compelled to file a report about your healthcare provider.

It is important to note that the process for such reports will differ based on the state, hospital system, and type of incident you are reporting. Search the website of your state’s health and human services agency to find their complaint process and/or ombudsman office. On the federal level, you can find information about filing reports related to civil rights, clinical trials, hospital and Medicare providers here.

Connecting with other rare disease patients, especially other young adults with rare diseases, allows you to share information, resources, and support for each other.

Here are some ways young adults have successfully found communities, whether specific to their condition or cross-rare disease:

• Search for a local, in-person support group in your region.
  • Ask the administrative staff at your doctor’s office if they can recommend any nearby groups.
  • Look for flyers at local establishments, such as public libraries, school bulletin boards, and physical therapists’ offices.
  • Search social media for support groups based in your city or county.
    
• Search for a national organization relevant to your condition.
  • You can use the Genetic and Rare Diseases Information Center (GARD) from the NIH to find recommended patient organizations for your condition or similar conditions.
    
• Search for virtual support groups centered on your condition.
  • See if the patient organization for your rare disease community offers online support groups, forums, or local chapters.
  • Search social media for support groups available.
    
• Search for organizations that include young adults with various rare diseases.
  • If you are not yet involved in the RARE Young Adults, you can find more information here.
  • Starting in late 2021, RARE Young Adults has begun convening organizations that support young adults with rare diseases in our Young Adult (YA) Coalition. You can search for organizations relevant to you and your condition among those listed. You can also reach out to programs@rareadvocates.org if you are an organization wanting to join.

Recent scientific publications may shed light on aspects of your rare disease.

If you are new to understanding the science of your rare disease or unsure how to access publications, you may want to consult the following resources before meeting with your healthcare team.

• For a basic overview, search your rare disease on the Genetic and Rare Diseases Information Center (GARD) provided by the NIH.
• This article housed on PubMed Central details the types of scientific publications you will encounter and how to parse apart their structures.
• This guide aimed at non-scientists provides a solid introductory overview of how to interpret scientific articles.
  

If there is a scientific article you feel is relevant, print out a physical copy to bring into your appointment.

Your provider can review the article with you, answer any questions you have, and determine if the article’s findings potentially impact your treatment plan.

• Consider printing an extra copy and leaving it for the medical provider to review in more depth after your appointment.
  

You may want to share recent research on the impacts of living with a rare disease.

This is especially true if you are seeking your provider’s support in accessing accommodations or healthcare services not traditionally covered under insurance plans. You can read the RARE Foundation’s National Economic Burden of Rare Disease Study. This study provides context on the myriad economic challenges faced by those in the rare disease community, including and beyond immediate healthcare costs.

You can request and maintain your official health records throughout your healthcare journey.

This allows you to coordinate with your entire care team, including new providers, in a system where doctors’ offices have a lot of information to maintain.

• This guide from the Office of the National Coordinator for Health Information Technology details how to request and use your health records. You can find information on communicating with administrative staff about your health records, finding and updating inaccurate information, and managing your overall health information.
  

When sharing records between multiple providers, make sure to coordinate with the involved offices.

This helps ensure your new provider receives all proper information and can add it to your patient file at their practice. When your healthcare team shares the same knowledge and resources, your healthcare can be more effective and consistent.

Create a Medical Alert on your phone or via a specialized device.

You can update information on your diagnoses, symptoms, medications, allergies, and more in a Medical Alert. Whether available through your phone, an alert bracelet or keychain, or another device, having your medical information easily accessible in the event of an emergency can ensure you get faster, more effective care, especially when you cannot directly communicate with emergency responders.

You may need to request a letter of support from your healthcare provider while seeking accommodations at school or work.

This FAQ from the Job Accommodation Network (JAN) covers how employers may request medical documentation under the Americans with Disabilities Act. Many places of higher education have similar policies. You can search for sample accommodations received by those with similar conditions here. You can also find sample letters written by providers, which may offer a helpful template for your own provider’s office, here.

Some aspects of navigating healthcare as a young adult with a rare disease may be more difficult if you belong to additional marginalized groups.

If you are marginalized due to race, gender, overlapping psychiatric diagnoses, and other identity categories, you may face additional barriers in building an effective and communicative care team.

This will make your own process of collecting and sharing information even more important. You deserve to—and you can—find a responsive, supportive healthcare provider in your journey.

For more information on diversity and rare disease, check out the RARE Foundation’s Rare Diversity Hub.

You may want to seek out scientific and sociological resources that share under-known information with your providers so they can better assist you.

For example, if you are a transgender young adult with a rare disease, you may want to offer resources on the statistical overlap of those in the transgender community and those in the rare disease community. This helps your provider contextualize the barriers you face and provide more effective, personal care.

You can find more advice on accessing and interpreting scientific articles here. Many databases will also include social science articles, and if you are a current student, you can use databases such as JStor with access through your university. Try searching terms such as “rare disease and [another identity you hold]” or “social determinants of health” to begin.

If English is not your preferred language, resources exist to help you access healthcare more effectively.

Hospitals that receive federal funding are required by law to provide no-cost interpretation as well as translated forms and documents for patients with primary languages other than English. Communicate with the hospital’s administrative staff that you require interpretation as entitled under the Civil Rights Act of 1964 and U.S. Department of Health and Human Services regulations.

If you are Deaf or Hard of Hearing, you have the right under the Americans with Disabilities Act to request interpretation during your medical appointments or hospital visits.

You may find additional meaning in patient support groups, including ones focused on patients across disease groups who share your marginalized identity.

Here are some ways other young adults have successfully found supportive communities.

• 20 Tips To Help Prevent Medical Errors: Patient Fact Sheet from the Agency for Healthcare Research and Quality
• Accommodation Search from the Job Accommodation Network
• ADA Business Brief: Communicating with People Who Are Deaf or Hard of Hearing in Hospital Settings from the U.S. Department of Justice
• Affordable Care Act (ACA) Policy Primer from the RARE Foundation
• Art of reading a journal article: Methodically and effectively from the National Library of Medicine
• Building a Care Notebook from Global Genes
• Children’s Health Insurance Program (CHIP) from the U.S. Centers for Medicare & Medicaid Services
• Comparing Health Plans’ Benefits and Coverage Summaries from the National Disability Navigator Resource Collaborative
• Complaints & Appeals from the U.S. Department of Health & Human Services
• Continuation of Health Coverage (COBRA) from the U.S. Department of Labor
• Dependent Health Coverage and Age for Healthcare Benefits from the National Conference of State Legislatures
• Estimate my Medicare eligibility & premium from the U.S. Centers for Medicare & Medicaid Services
• Explaining Health Care Reform: Questions About Health Insurance Subsidies from the Kaiser Family Foundation
• Financial Advocacy in RARE: Navigating the U.S. Health System for Young Adults from Global Genes
• Financial Support Resources from the RARE Foundation
• Genetic and Rare Diseases Information Center from the National Center for Advancing Translational Sciences
• Glossary from the U.S. Centers for Medicare & Medicaid Services
• Got Transition Frequently Asked Questions from the National Alliance to Advance Adolescent Health
• The Guide to Getting & Using Your Health Records from the Office of the National Coordinator for Health Information Technology
• Guide to Reducing Hospital Bills for Lower-Income Patients from the National Consumer Law Center
• Health Insurance Marketplace from the U.S. federal government
• How To Get the Most Out Of Hospital Price Transparency from the U.S. Centers for Medicare & Medicaid Services
• How to read and understand a scientific paper: a guide for non-scientists from the London School of Economics and Political Science
• ICD Code Roadmap Resource Guide from the RARE Foundation
• Insurance Access & Coverage Resources from Parent Project Muscular Dystrophy
• Insurance Basis from the Cystic Fibrosis Foundation
• The Keys to Good Relationships With Your Care Teams by former RARE Young Adults member Ella Balasa on the Society for Participatory Medicine Blog
• Limited English Proficiency (LEP) from the U.S. Department of Health & Human Services
• Medicaid & CHIP coverage from the U.S. Centers for Medicare & Medicaid Services
• The National Economic Burden of Rare Disease Study from the RARE Foundation
• Navigating Health Insurance from Global Genes
• A Patient’s Guide to Navigating the Insurance Appeals Process from the Patient Advocate Foundation
• Rare Diversity Hub from the RARE Foundation
• Requests for Medical Documentation and the ADA from the Job Accommodation Network
• Sample Documentation for Workplace Accommodations from Disability Rights Texas
• Summary of Benefits and Coverage from the U.S. Centers for Medicare & Medicaid Services
• Telehealth and the Rare Disease Community from the RARE Foundation
• Tips for Maximizing Pediatric Nephrology Appointments from the Alport Syndrome Foundation
• Transition of Care Through Adulthood from Parent Project Muscular Dystrophy
• A Transition Toolkit for Duchenne Muscular Dystrophy: Supplementary Materials from Parent Project Muscular Dystrophy
• Tricare from the U.S. Defense Health Agency
• Understanding and Navigating Medicaid from Global Genes
• RARE Young Adults Leadership Summer Series: Policy 101 (Medicare, Medicaid, and the Affordable Care Act)
• RARE Young Adults
• RARE Young Adults Coalition