When it comes to finding resources, sickle cell is one of the most under-represented chronic medical conditions. There are over 90,000 people affected with sickle cell in the United States, and yet, other orphan diseases that affect way less people get far more funding and support. Until things turn around, sickle cell warriors will have to advocate for ourselves to find the money, support, and resources we need to combat the chronicity of this condition,pay for these overly expensive medications and hospital bills.
This series will cover the different resources we have in the United States. There are many new laws, programs and organizations, that can help us pay for our medical bills, insurance, medications etc. that most of us don’t know about. Most of this was collated by our great researcher Lakiea Bailey. You can also hear Part 1 of her Patient Advocacy Talk with WDC (What’s Da Count) on Blog Talk Radio HERE.
There are 3 parts to this series. Part 1 covers the problem of Health Insurance. Part 2 covers Paying for Medications. Part 3 covers Writing a Hardship Letter.
Roadblock 1: Health Insurance. Sickle cell is considered a ‘pre-existing condition’. This clause limits coverage by most major insurance companies until certain conditions are met. You can buy an insurance policy with them, but they will not cover your sickle cell treatment until your ‘probationary period’ has passed (usually after you have paid into the plan for 6-12 months). As a result, it is very difficult to get covered by medical insurance unless it is via a group insurance plan through your job, or your parents’ job. Even though the New Healthcare Reform Act has been passed by Obama, the effects are still not felt by most ordinary citizens yet.
Listed below are 4 plans to beat this roadblock. You can use them all, or a powerful combination that keeps your credit on track and helps pay for those high, expensive medical bills.
To Beat Roadblock
Plan A–Your Parents’ Insurance
If you are still covered by your parents’ insurance, you do not have to get off this plan EVER! Even though the insurance companies’ have a cap (usually at age 25 you are kicked off the plan), there is a loophole. With sickle cell, you can be considered DISABLED. A disabled child can stay on their parents’ insurance plan indefinitely. To apply for disability status, all your doctor has to do is send in a letter to the insurance company, stating that you are disabled. The only hitch here is that once you come off your parents’ insurance plan, you cannot get back on it. So those of you that are still under the cap and are on your parents’ insurance plan—make sure you have your doctor notify your insurance company that you are disabled.
Plan B–Medicaid/Medicare
If you have a primary insurance, you can apply for Medicare to help with the deductibles or medical bills that your primary insurance won’t cover. I wish I had known this years ago. If you have been kicked off your parent’s insurance and do not have another plan through your job, then you should definitely also apply for Medicare. Medicaid will pay for most of your hospitalizations and medications. This is a long, laborious process, and you need to have the patience of a saint, and be detail oriented and good with paperwork. I suggest you use a case worker to file, as they will explain the process, and might even be able to expedite it for you. You might get denied the first, or even the second time you apply, but keep filing until you get approved.
If you get denied, do not just let it go. Continue to file and ask for benefits—take it all the way to the court system if you have to. Sometimes, all it takes is standing before a judge and explaining your situation to them; they might be moved and mandate Medicare to accept you. Remember, a closed mouth does not get fed. Be sure to explain in all your documentation how hard your life with sickle cell is. Go into detail about the pain, the difficulty breathing, the insomnia and how this all affects your life. Describe your mood swings, depression, and how it is hard holding down a job due to your excessive absenteeism. Your doctor has to be your partner in this, so make sure you have a good doctor that supports you getting Medicare and is willing to explain in detail your medical condition. The good news is that Medicare will back pay all your medical bills from when you filed your initial application, even if they don’t approve you until a year later. So don’t give up—fight it until you win!
Plan C–Indigent Hospital Program/Charitable Endowments.
Did you know that many of the hospitals in the United States have endowments and programs that can help you pay for your medical bills? I found this out the hard way. Don’t let a hospitalization ruin your credit and your life. Hospitals that accept funding from the federal government have to provide a % of free services to the communities that they serve in. Most University Hospitals fall under this area, as they are primarily funded by grants provided by the federal government. To get their tax breaks and retain their non-profit status, they write off MILLIONS of dollars a year. In addition, hospitals that get charitable endowments must show that they are giving back to the community.
When you get your first bill from the hospital, call the number on the Patient Business Services (it might be called something else, but it’s on your bill). Tell them that you are unable to pay this medical bill and you would like to apply for Financial Assistance. They might hem and haw, so you need to be firm but polite. You can say something like, “Since I was sick, I haven’t been working and things are really hard for me right now. I don’t know if I can ever pay this, and I need some help.” Eventually, they will ask you some pre-qualifying questions. Provided that you don’t make more than $50,000 a year, most people are eligible for the program. They will send you some paperwork, which you must state your assets (house, commercial property, inheritance), how much you make, how many people in your household, and include a copy of your last tax return. Do not use your parents’ information—this is strictly based on your finances. Fill out the paperwork. I also suggest including a hardship letter, that says so sweetly how hard it is to have sickle cell, what struggles you are going through, and how you really appreciate their support. This letter is often shared with their investors/funding organizations as proof that the hospital does give back.
Make sure that you turn the paperwork and Hardship letter in as soon as possible. There is often a deadline given and if you miss that deadline, you might have lost your shot. Keep copies of everything for your records. Within 2 weeks or so, they will send you a letter saying your debts have been forgiven. Get on your knees, thank God, and keep it moving.
Plan D—The Patient Advocacy Foundation visit them at http://www.patientadvocate.org/ or call 1-800-532-5274
This organization does not pay for anything, but they will help you locate resources in your community. You are assigned a Patient Advocate that will go over your medical/financial needs. They will try to help you find health insurance, and can help you with the filing/appeal process for Medicaid/Medicare. In addition, if your health is starting to affect your attendance and your job, they can provide you with Disability assistance and a patient advocate to help save your job. On top of that PAF also provides Debt crisis intervention for your medical bills.
You can do all these things, or some of them depending on your needs. The most important thing is that you don’t give up until you have the medical bill taken care of, off your record, and paid for. It can be done—you just have to figure out how to do it, and have the patience and fortitude to navigate the roadblocks.
Damn! Wish I knew about Plan A when I was graduating college
I’m an older women with sickle cell and the hospital bills are so hard on me, not only that I still manage to keep my job but I’ve been absent so often that I’m usually in the negative on my leave time, sometimes its so depressing and I feel so all alone. I have my family but I still feel all alone and drowning in dept with medical bills. This site was helpful Im going to check into applying for Medicare I didn’t know that was something I could do since I work.
Endari is the first drug approved for Sickle Cell in 20 years. Unfortunately, it costs about $2,300 for a month’s prescription. Know what it’s made of? It is L-glutamine, an amino acid that is available on Amazon for $10-20 a bottle. If you don’t believe me, look it up for yourself.