Life with sarcoidosis can be hard and no one knows that better than our patients. Doctors and other medical professionals can answer some questions, which is why we host Q&A sessions. However, there are questions that doctors can’t answer, about experiences they can’t fully understand. This is why we reached out to you, our patients, for advice.

We know that the fight against sarcoidosis can sometimes feel overwhelming, but we want you to know that you are not alone in your experiences. Over the last couple months you gave us advice on hard conversations with friends and family, how to navigate financial concerns that come with sarc, how to live a healthier lifestyle, and how to make the medical system work better for you. We hope that all of this advice, when passed on to other sarc warriors, will help make someone feel less alone in their fight.

Keep checking in throughout the coming months for the more advice from your fellow sarc warriors!

Navigating the Financial Concerns that Come with Sarcoidosis


What financial burden(s) has living with sarcoidosis created for you/your family?

“I sometimes drive 4.5 to 5 hours by car for a doctor’s visit. If I have a 9:00 AM appointment that means I have to get a hotel room and I’m traveling for two days. I’m on disability because of the effects of sarcoidosis on several organs. Now, I’m on Medicaid because I can’t work. I don’t know where to get the money for everything. I’m mentally and physically tired from all of it.”

“Having to pay medical bills has left me with no savings. That first year we used everything to pay the hospitals. Since then, we’ve had to chip away at the bills with payments. I started using my employers flexible spending program but have a hard time gauging my expenses for the whole year. We almost always end up paying more than my flex.”

“I have a high deductible which results in high co-pays/co-insurance to the tune of thousands per year. I’m expected to keep up with yearly/monthly diagnostic tests to monitor disease progression which only adds to my costs. If a mammogram is an allowed yearly test, a chest x-ray or CT scan, pulmonary function tests, etc. should be allowed for people with lung diseases.”

“Loss of income has changed my family’s future. It is sad that my illness means my children have to miss out on things other children take for granted.”

“Waiting for a diagnosis, appointments, specialists, tests, checkups, treatments, travel costs to multiple appointments, often times with lengthy commutes all create a huge burden. The hardest hit for me was having to quit work and file for disability. You lose everything while waiting for approval. I am blessed with a supportive and understanding family. My heart goes out to anyone who does not. You should not have to fight this fight alone.”

What advice do you have for sarc warriors that are trying to use assistance programs that help with medical bills, access to medications, or any other financial support?

“Be an advocate for yourself! Definitely do not give up… This is something that people have not heard of and are just now becoming aware of.”

“Check out ‘Patient Assistance Programs’ under the medication in question. You will need to fill out forms and submit to the program. I have been fortunate to have help from my insurance company. Also, I have a patient assisted medication program.”

“I fell between the cracks for assistance such as utilities or food stamps. Johnson and Johnson has paid for my remicade infusions. You can apply online through the drug manufacturer for patient assistance programs. They’ve been very helpful.”

What advice do you have for a sarc warrior that is trying to apply for SSI, SSDI, VA benefits or any similar program?

“I applied for disability and was initially denied. I’m currently on round two of fighting for it. It is very demeaning going to a doctor that disability recommends, and then having them tell you that they think you’re lying about the pain. He told me to be a door greeter at Wal-Mart so I could have insurance.”

“I applied for SSI Disability about a month ago and it is still in the processing stages and I have no idea how long this stage will last. The biggest challenge that I faced during this process was having to go back through two years of treatment and get all the doctors information, the dates I saw them, the tests they had me take, the medications they prescribed to me, and any information related to my treatment. My advice to anybody dealing with sarcoidosis now is to document all of these things as they happen. Then if you ever have to apply for SSDI, you already have all your information.”

“I was denied at first but then I went before a judge and I was approved. Getting approval took me two years. My advice would be to make sure your medical records, including all specialist related to your illness, are sent to the social security office and make sure you keep copies of everything you send in.”

“I’ve never actually applied for disability because my case was evaluated by a disability attorney who checked my eligibility for me. I received notice from Social Security that I am absolutely not eligible. They said I might qualify for Supplemental Security Income (SSI) if my husband and I divorced and no longer lived together. This is obviously not an option and I don’t know where to look next.”

What advice to you have for sarc warriors that are struggling with their medical bills or insurance?

“Make sure that your insurance knows what you are dealing with – that your disease can be chronic and require more frequent treatments than once or twice a year.  If you are having trouble paying your bills do not wait for them to go 90 days late – talk to the financial advisors at the medical facility and see what they can do to help.  They may not have a perfect solution for your situation but you won’t know unless you ask.”

“Check out sliding scale/income based clinics, they don’t offer everything but are better than nothing.”

“Go to debt counselling and see if any support can be offered with any of your benefits.”

“Medical bills, pay them each month period even if it’s $5 or $10 pay them monthly.”

“I always ask to do a monthly payment plan, or asked a discount can be given if paid in full.”

“Setup payment plans with your providers and pay as you can and just keep an open communication with them regarding your medical bills and your ability to pay.  Ask doctors for coupons or samples if they have them. Some doctors are willing to give you these and they help tremendously.  Budget more than you ever have before, eliminate unneeded bills, and save any chance you can.  Your family and friends have to be understanding also that you are dealing with major bills that are crucial to your health and your health is the most important thing.  A positive mindset is key over everything, even though things may seem bleak you have to remain strong and positive.”