Insurance Rant

I want to discuss a growing problem for many who care of or live with chronic illness. This is a growing issue that poses a particular problem with those who require on-going medical care, but it is effecting a large number of people.

I have Rheumatoid Arthritis. I was diagnosed in December of 2014. I began treatment after my initial appointment with a rheumatologist in April of 2015. Within this last year I have started therapy with multiple medications to help control the disease and slow the destruction of my joints. Unfortunately, the time required to wait for my initial rheumatologist appointment and the severity of my disease had already destroyed multiple joints to the point of needing multiple surgeries. Disheartening still is realizing at the end of 2015, I would no longer be able to afford my healthcare, with insurance.

I’m not the only one. In a recent thread on social media, a friend shared about how upset she was about the $800 bill she received from one test to a recent trip to the children’s hospital with her daughter. This sparred a conversation with numerous other people who were experiencing the same thing. All those responding had insurance with high deductible plans. The families and their employers are paying premiums for plans that don’t pay anything until a deductible of several thousand dollars is met. This is sadly becoming the norm for families like mine that live on a limited budget and don’t have the money to meet the financial burden required to use the health care system.

I have a disabled child and I have a chronic illness. Thankfully our state offers assistance to children with medical handicaps that helps assure my son doesn’t go without the medication he needs, but the system isn’t perfect. Social security and insurance isn’t automatically provided to underage children with disabilities. Many times the only coverage is through private insurance. I can recall many of our own horror stories as well as those of other parents with special needs children who have had to fight with insurance only to run out of medication for our children. It isn’t right.

I spent the better part of December wondering how I was going to continue my medical care. We have since received generous help from friends who helped meet some of our financial needs, but we still don’t have enough money to pay for the necessary doctor’s appointments and medication I require. Now we have to see if my doctor’s will work out payment plans, see me less often, and reduce my medications to help me try to meet the financial demands of my illness and those of our family.

I guarantee many people are lying in bed with the same worry, how can I afford to pay for my care and still buy groceries or pay my mortgage? I know because I’ve talked with them. Parents are sick over the large bill they received because their child had an unexpected visit to the hospital, the caregiver to an aging parent is worried because they have to figure out how to pay mom or dad’s mortgage while they spend time at a nursing home in rehab, or a parent of a child with severe epilepsy is crying because insurance is using every last tactic to stop shipment on the only medication keeping their child seizure free. How is any of this okay? Is anyone else ready to speak out about this? I hope so because no one should ever have to compromise their health care but sadly this is happening every day.

*d*

What is Important to Me in the Coming Election

Dear Presidential Candidates,

I would like to be very candid with you about my life because I am a representation of many silent voters who are watching you carefully. I am an American who is living with chronic illness and I am also an American who has a special needs child. It may be rare to have both a debilitating disease and a child with one but here we are and I want share 6 points that are important to me. By the way, I have Rheumatoid Arthritis and my son has Tuberous Sclerosis Complex. Neither disease has a cure so our problems are life long, so we hope for long term solutions to the issues that are important to us.

So, how can my life be important for your champaign?

1: My son collects Social Security Disability Income.
Thus far, I do not. My disease has become more debilitating since my diagnosis and some day I may choose to apply for Social Security Income, but the difficult process is enough to make me steer clear of it for now. Everything I have learned and experienced about social security is difficult. I don’t have to go any farther than my phone to realize how broken our system has become. Don’t get me wrong, I appreciate this vital lifeline but we have developed a love/hate relationship with this program that was supposed to be designed to help children and families like mine.

2: We are directly effected by drug companies charging outrageous prices on medications.
My son was prescribed a medication for a type of catastrophic epilepsy called Infantile Spasms. We saw a huge increase in the price of this medication after FDA approval. He has since started a new specialty medication and because of the price, we are required by insurance to get preapproval every three months. This means I am a sick with worry every three months wondering if they will approve the only medication that has helped my son have an improved quality of life and seizure control. When has it been acceptable business practice to jeopardize lives to make money? The practice of specialty medications being distributed only by speciality pharmacies has also become an issue. The problems some families run into with these pharmacies is inexcusable. These problems range from allowing delay in medication shipment (even if it means the patient will run out of medication) and dropping a patient without proper notification (we have experienced both).

3: I refused medication to treat my own disease because I didn’t know if I could afford it in the future.
In January our high deductible insurance starts a new year and we still don’t know if we will be able to afford the out of pocket cost until our deductible is met. More private insurance companies are offering skyrocketing deductibles with H.S.A. accounts. They try to say we can thus control our own health care with an H.S.A. but this is false. In the end we are paying a premium, pushing money into an H.S.A. account, and we still don’t have nearly enough money to cover these huge deductibles.

4: My son and I have missed out on equipment, medication and therapy needed to help us live the best quality of life.
Everything comes with a price tag and if you have a disease, are disabled, or have been diagnosed with something like autism or sensory issues, expect a huge price tag. My son has needed protective headgear and a bed enclosure for his epilepsy and we needed help paying for these steeply priced products. He have lived without many items that would certainly make life easier for both of us because paying the price for these items would be nearly impossible, even with assistance.

5: Getting help paying for the variety of different needs is complicated.
Life is already hard with these difficulties and so many people have to navigate the paperwork and hoops to try to get what is needed and/or prescribed. How to get help should be clear and require minimal paperwork.

6: Families are choosing between health and cost.
No one asks to be diagnosed with something life altering. No one asks to live a difficult life made harder by the system that seems to work against people like me and families like mine. The government needs to decide if it actually wants to help or just talk about it. Cutting funding for critical needs programs is a low practice that needs to be stopped. In the end, you aren’t messing with dollars, you are messing with lives.

We are supposed to be living in the greatest county but many Americans are without insurance or reasonable insurance plans to pay for their medication and health care. It is a tragedy when drug companies can set their own prices and have no regard to the lives effected when the medication patients need is out of reach. If you don’t believe it, go to the local hospital and ask questions instead of taking pictures. I guarantee parents still have to leave the hospital empty handed and without what they need to take care of themselves or a sick child. The life of the sick should never carry a price tag. How sad. It’s time to consider what life is like for those who need the most help.

*d*

Knee High in a Rant

Sometimes when I have a difficult day  I imagine sitting in front of a tall window dressed in sheer covering. The sun is amber and the wind is trickling in the crack of the window to disturb the sheer. I imagine the blue sky beyond and feel the warm breeze rise up my feet. It pulls at me and dares me to chase. I could run barefoot until I could run no longer. I would then lay back and watch the clouds float further than I could ever go. It would be quiet, it would be peace.

I love nature but find it hard to leave the comfort of my house. It has been hard to handle all my children outside the home with my special needs son. I never know when and what may set him off so it is less anxious for us both to remain here. I save my dreams for days when I have helping hands. There are also dreams I may never fulfill. These dreams are simple but it feels like they were taken from us by a thief. Taken by a greedy disease with it’s fear and unpredictability. I want a life back and it will never happen. I can try to be optimistic, but it won’t change the facts. I grieved for the life my son will never have and now I grieve for the life we have left behind. It sounds selfish but it’s true. Disease has a grieving process very similar to death. Maybe I have yet to reach acceptance.

This window I dream about is something I have been escaping to since I was a child. I had found that I had the ability to escape in my mind when my body could not. I hope my son can figure out how to do the same. I hope he can find a place far from his sometimes sad reality. He will never know a day without medicine. He may never understand why he must live with this burden and I may never be able to explain it to him. He just doesn’t understand but it doesn’t mean he doesn’t struggle because I assure you he does. That is a hard pill to swallow, even for a faithful person. He has purpose and meaning. His life has already made differences, although he may never know.

For all he is, it makes my heart hurt to know that I cannot provide him all that he deserves. I can’t provide him a beautiful day in the park if his disease won’t allow me the ability to help him enjoy it. I am angry that so much has been taken from all of us. I have lost my identity in this disease right along with him. I didn’t want it to take over my life, it just happened. I have to think about it every day. I think about it the four times a day he gets his medicine. I think about it every time he gets on a bus and isn’t able to attend school with the peers in our hometown. I will think about it every time a school milestone occurs and he won’t be asked to participate. Sadly I can’t carry this for him. I can only grab his hand and help him along and when it’s really bad, I can carry him.  Mostly, I wish I could take it away.

I feel removed from this life in a lot ways so please excuse me when I seem put off by the problems I wish I had and forgive me if I can’t be more sympathetic. I am busy staring out my window. My mind is too busy running out the window and toward the sun and imagining a normal existence.

*d*