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Navigating Through the Healthcare System with IIH

Learn helpful tips to support your patient journey from symptom to diagnosis.

Idiopathic Intracranial Hypertension (IIH) is a rare neurological condition. Providers encounter this disease infrequently compared to other diseases, making the patient journey from symptom to diagnosis a long and complex one. There can be roadblocks along the way such as access to the right provider and healthcare insurance can add another layer to this process.

Navigating through the healthcare system with IIH in the United States is a multistep process that will require endurance, attention to detail and patience from you and your support system.

Strength in numbers

You are not alone. You have a team, it is your family, friends, co-workers, and the growing group of people in the IIH community. Everyone is here to lend a helpful hand, give advice, or be a trusted resource. 

Create a team. Choose ones that you can share your personal information with so they can attend appointments and schedule testing. Create a shared notes folder on your smartphone or journal so that when you see a provider, you can ask the right questions or give detailed answers. 

Taking the first steps 

It may be tiny steps. You may take a few steps forward and one step back but at least you are moving in the right direction. On a bad symptom day or week, it is possible nothing will get done. You may not be able to go to work, let alone sit on the phone for hours to get insurance approval or search for the right provider. Do not be afraid to designate someone you trust to help. 

  • If you have insurance, know what your deductible is and what the costs are after you meet your deductible. 
  • Ask your provider’s team to ensure that your physician is on your insurance plan.
  • Double check with your insurance company what coverage you have for special tests and procedures.
  • Pay close attention to the interval between special tests and advanced imaging. At times your plan may only cover expensive tests once a year. Knowing this information can help you create a spreadsheet to prevent being charged out-of-pocket.  
  • Ask your insurance company if you are able to see a specialist out of network and what percentage, if any, would be covered.
  • See if your insurance plan will allow you to see a specialist via telemedicine. 

Seeing a provider who is knowledgeable in a rare disorder can help you expedite your time navigating through the healthcare system.

Finding the right provider

Physicians can specialize in a specific field such as neurology. They can even further their training by spending more time studying a specific condition, like IIH. Seeing a provider who is knowledgeable in a rare disorder can help you expedite your time navigating through the healthcare system. It can also translate to less testing, less procedures, and less trips to the emergency room. 

It is possible the group of specialists in your insurance plan may not have a provider who is proficient in IIH, but that does not mean that you will receive low quality care. Having a rare disease is unique and a large portion of providers will not have knowledge or exposure to IIH. By being an advocate for yourself, you and your medical team can work together to get the right care you need. 

Diagnosis may not transition to treatment

With rare disorders, it is possible that after months or years of countless appointments and testing, your medical team has finally given you a diagnosis, IIH. Now what happens with that information? Where do you go to receive treatment

It is possible that even with a diagnosis, your insurance company may not cover treatment. You may not be covered for a shunt or stenting. If your insurance rejects having an invasive procedure, your medical team may have to appeal their decision. This will take a lot of communication with your provider and your insurance company. 

Insurance roadblocks

Insurance is just a component of a larger picture that allows access to healthcare. Because some insurance companies do not understand the complexity of medical care that one with a rare condition has, it requires the patient to track benefits and be meticulous about their healthcare. It also forces patients to enroll in multiple coverage plans to improve coverage. Unfortunately that is not possible to everyone due to costs or eligibility. 

With the creation of policy initiatives towards those with rare diseases, it could improve payment and delivery systems. Each state has their own organizations and policies that affect you. 

The Rare Disease Advisory Council (RDAC) and National Organization for Rare Disorders

The Rare Disease Advisory Council (RDAC) is an advisory body that gives the rare disease community a stronger voice in 26 states. With the support of the National Organization for Rare Disorders (NORD), is a national nonprofit organization who represents those who are afflicted with a rare condition. Please visit these websites to learn more about what they offer to patients with a rare condition, like IIH.

The National Organization for Rare Disorders (NORD) also created a webpage to look at your state and provide a grading system, AKA report card, on nine policy issues that impact the rare disease community, including protecting patients in state-regulated insurance. 

We hope to provide you a template to help you keep all of your information organized and continue to bridge the gap between providers and patients. 

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May 8, 2024
With the help of the IIH community we have created a Patient Journey webpage to support IIH patients and caregivers...

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Patient stories

“I know everyone says to trust your gut, so I’ll say trust your headache. Your pain is real, and ‘borderline-ish’ does not serve anyone.”
“Knowing your diagnosis and following the latest science and research is crucial in a world where you will encounter medical professionals who have never seen an IIH case.”

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