FEBRUARY 2025
Navigating Insurance, Fundraising, and Medical Systems
Facing a rare disease like amyloidosis can seem overwhelming.
It IS overwhelming when you look at it all at once.
It's stressful because it's something you've never done before.
And because someone you love is hurting and dying.
And because there are 3 very different systems you now need to become an expert in: Insurance, Fundraising, and Medical Systems.
You start out as a novice at each of these systems- and then, you become better because you have to.
But what if you didn't have to do it alone?
Let's look at the three systems you need - and what you need to become your own advocate - AND to add the right people to your team for that system.
Understanding the Landscape of Insurance
Understanding your insurance is crucial when seeking treatment for amyloidosis. Many patients encounter confusing policies and unexpected costs. Self-advocacy in insurance matters is essential for accessing the care you need.
Be Your Own Insurance Advocate
Know Your Policy: Start by thoroughly reviewing your insurance policy. What treatments and medications are covered? According to the National Institutes of Health, around 30% of patients with chronic conditions face issues with their insurance coverage. Familiarity with your plan can help you avoid surprises.
Ask Questions: Don't hesitate to reach out to your insurance company. Have a list of specific questions ready, such as:
What treatments require prior authorization?
What specialty medications are covered?
Are there specific restrictions for amyloidosis treatment?
Appeal Denials: If your insurance denies coverage for a treatment, knowing how to appeal is important. Keep records of every communication with your insurer. This documentation will be essential if you need to challenge any denials.
Protip: Add People To Your Insurance Team
Call your health insurance and ask to speak to an "Insurance Navigator." Get their direct number and email. Explain your story and your case. Ask them any of your questions. Get them to advocate for you. Ask what needs to be pre-approved. Ask if there's a "rare disease" form you can fill out. Ask them what you're missing to get approved for where you need to go.
Navigating Fundraising
No one being treated for a rare disease likes asking for money.
It's ok.
They just need to know how.
Be Your Own Fundraising Advocate
Outline Your Needs: Clearly define what you need, and what it will be used for. In our case, we don't have a limit/goal as Tony will need treatments for life, but we do tell our donor what any donations will be used for.
Choose the Right Platforms: Utilize crowdfunding sites or local giving sites. Create Merch to promote awareness. See if a local bank will set up a "Benefit Account" with its own EIN. And put all donations/medical exp directly into that account. Share your story. Get real, and personal. Share photos or videos as much as possible. And celebrate milestones with your donors.
Engage Locally: Look for local groups that focus on rare diseases or health issues. Look for medical foundations in your area. Many communities offer support networks. Giving your community a chance to support you through an in-person fundraiser - strengthens your community ties.
Protip: Add People To Your Fundraising Team
Think of assembling a great business team. Everyone has their own strengths. A fundraising team is the same. You're going to need a couple of people with the following skills:
Storyteller/Writer: Do you have a friend/family member who is great at telling stories? Get them to interview you and record it. Use that recording to write your story. Share snippets of the interview on social media and Facebook. Faces and people make empathy and investment more genuine. And genuine vulnerability is what you need. Get them to ask you what your challenges are, and help you define what you need.
Connector: Do you have a friend/family member who is VERY connected in your community? You know that person who knows what's going on - and cares about it. That's the person you need to share your story. Have them talk about it on social media. Have them Share your online fundraiser. Have them plan a local fundraiser for you.
Photographer: Do you have a friend/family member who ALWAYS takes the photos? Schedule a family photoshoot. Ask them to take photos at fundraisers, friend get-togethers, or small videos of you and your loved ones. These photos are key. People want to help people. Photos show them who they're giving to. Photos connect the need with the heart.
Beta Readers: Do you have a few friends/family who want to be the first to know things? Or to find & point out the edits needed? GET THEM ON YOUR TEAM. There are so many scammers online these days. You can build trust with your online donors by making sure you have beta readers reading your updates and online content before you share it with your donors & community.
Being More Than a Number in Medical Systems
Interacting with healthcare systems can be tricky.
Especially with a rare disease like Amyloidosis.
Every day and month before treatment counts as the disease builds up - so you feel immense pressure to get it right the first time.
First of all, Breathe.
It's high-pressure. High-stakes. BUT your own health is important too.
You don't have to do it alone.
But you may have to START by being your own advocate, then add people to your team.
Self-advocacy in amyloidosis is critical for receiving timely care.
Diagnosis of the Amyloidosis disease is not the same thing as the disease onset (when the symptoms start.) BUT if you know you have the gene, you can connect with the right doctors, and get treatment as soon as possible. This disease is fast-moving, once it starts. So early detection is key to survival.
Go To A Center For Excellence: Get yourself or your loved one into the nearest "center for excellence." Because Amyloidosis (hATTR is the kind Tony has) is a multi-system disease, you need doctors who specialize in each system of the body - and you NEED them to talk to each other.
Get Permission In Writing Your loved one can add you as a health partner/health advocate through the Release of Information Office to get you all the permissions to see AND to add to their health portal/info. THIS IS IMPORTANT. Your person may not remember their disease symptom timeline correctly, or pay attention to all the medical directions a doctor is giving after a full day of appointments.
Ask For Forgiveness - Depending on your socio-economic status, you may not be able to afford treatment for a rare disease like hATTR. Get treatment before you try and wrangle the medical bills. EVERY MONTH COUNTS in the build-up of amyloids and how it affects the body. There should be a case manager or social manager available at any reputable center for excellence that can help you navigate this after you get your loved one started on the treatment they need.
Protip: Add People To Your Medical Team
If you're at a center for excellence, you'll be assigned a care team, as well as a head of that care team.
This person may or may not be the right fit for you. Ask questions. If you're not clicking with that person, find someone on your team that DOES click with you. You want someone who not only knows their stuff, but knows how to listen AND respects you too. Ask them to co-ordinate you or your loved one's treatment.
Building a Support System
Remember that you are not alone.
It may feel like it, because it's rare. But there are so many of us finding each other, and supporting each other from all over the world.
Connect with Others: Seek out other patients or support groups dedicated to amyloidosis. Sharing experiences with someone who understands can be both comforting and empowering.
Educate Family: Involve your family in your journey. Share information or webinars about amyloidosis with them, so they can advocate for you.
Share Your Story: Don't hesitate to communicate your challenges with those around you. Let people in. People want to help - they just need to know how.
Your Path Forward
Start by becoming your own Advocate.
Know your policy, share your story, and get to a center for excellence.
Then add people to your Insurance Team, your Fundraising Team, and your Medical Team.
How to Start
Take just one of these steps today:
Contact your insurance representative and ask for a Health Navigator/Partner.
Search for a local medical foundation and ask if they do fundraisers for local families like yours
Join a local or online patient/caretaker support group.
You are not just advocating for yourself or your partner - you are building your team of advocates.
Keep Advocating For You and Your Loved Ones
♥ Sue
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Living with hATTR
There is no current cure for Amyloidosis. – YET. But in the last 9 years, there are significant advancements in NEW medications that can slow the disease down, and change the story.
We believe that living with hATTR = living with hope.
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ABOUT THE AUTHOR
My name is Sue Skavlem.
I'm a visual messenger – not a doctor.*
My husband has Amyloidosis. And it took me a year of googling to understand what an "adult-onset multi-system genetic disease" was.
After learning that "Amyloids have the tensile strength of steel", I came up with the "Accumulating BBs Theory."
My hope is to promote awareness of the disease, update our friends & family on our journey, and create resources other families with hATTR can use.
*Information in this article is meant to inform, but is not medically reviewed, nor should it be used to self-diagnose. Please talk with a medical doctor about free genetic testing if you or a loved one may have hereditary Amyloidosis.
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