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I have recently been diagnosed with MS. That, in and of itself, is a long road and the endpoint is sort of like throwing darts. But there it is. I am married, I have 3 boys. My oldest has a brain injury and has been living in a specialized residential school and treatment center for almost a year which is, thankfully, funded by the local public school system who failed him so miserably.

I live in Massachusetts. The Powers That Be insist I have healthcare coverage, BY LAW. I tried to outright cancel my BCBS membership and was told it is illegal until I prove I am covered elsewhere. NO ONE ELSE will take me. All my applications have been denied based on pre-existing condition. So, Im literally forced, against my will, to keep BCBS. If I choose not to admit I have BCBS when I seek care, I am reported and fined heftily.

BCBS, in turn, has upped my deductible, stopped paying for hundreds of most prescribed drugs, lowered my fucking cap (yes, really!!), and now lowered their allowable amount for billing.

Doctors, in turn, have raised their fees across the board.

So, I am receiving bills for hundreds (and now thousands), on a DAILY BASIS. I am not exaggerating and I swear on my childrens’ lives this is true. I am in debt to my eyeballs and now everything is in collection.

*My son’s school requires mandatory bloodwork due to the medication he takes. BCBS pays for 80% of the medication but the lab who does the bloodwork charges us $369.70 every 3 months. This is AFTER they have been paid by BCBS. This includes a $50 “travel allowance”.

Their office is a mile away.

*My EEG is costing us $577 and change. That’s the test itself. We are also being billed $80-something for it being read, and another $30-something for the report to be transcribed!!

*Brain MRI? Double the above AND some random neurologist is charging us almost $100 for “interpreting the test”. Really? AFTER we were billed by a radiologist for the VERY SAME SERVICE???

*BCBS sent a packet on Saturday that neither of us had the energy/heart/courage to open. So I did it this morning. It is a letter explaining their new pharmacy benefits for our plan:

*4 pages of medications (in 8pt font) that they will not cover, period. It includes ALL acute anxiety drugs that I know of (ativan, xanax, klonopin, etc). It also includes all the seizure drugs I personally know (which Im sure is not a comprehensive list) and at least 2 of which I am supposed to be taking.

*2 pages of medications they will cover only once proof and documentation has been “reviewed and approved” that other drugs in it’s class were tried and failed. This process will take “15-30 days”.

*Another list of medications Prior Authorizations are required for, in addition to the ones they already make you jump through rings of fire for.

*They flat out are not covering any “new medications” until reviewed by the Pharmacy and Therapeutics Committee, which “provides expertise and advise to help…..give members drug options that meet their medical needs and achieve desired treatment goals”.

BCBS has finally announced that it’s committees and CEOs know what we need more than our doctors and will decide what it medically appropriate for us to have in terms of medications. Having never met us. Or seen our file. Or spoken to us.

I can go on and on. Call ( and if you are lucky enough to actually speak to a human being,) and question them on this (which I do, often) and I am told “that’s our policy”. End of story.

Id like to know how many suicides occur because people cannot afford to stay alive anymore. Truth is, I cant afford to have MS. I cant afford to go to this neurology appointment in Boston and NO WAY can I afford the spinal tap! I CAN afford to be dead because I have life insurance. Pitiful, yes, but it’s something.

Im not going to be able to keep my house and feed my kids if I pay these bills. If I DON’T pay them, the doctors, hospitals and labs are entitled, by law, to stop treating us.

I’m out of ideas. I’ve written to Congress, Senators, Obama, etc. It’s a joke. No one reads the emails because they get hundreds of them everyday. They are not concerned about the state of things because they are not paying medical bills. I once got a standardized letter from Sen. Kennedy, thanking me for my input.

I woke up this morning so stiff and in so much pain I cried. It took me about 4 minutes to walk down the stairs. My legs are charlie horses…all the way down. My left shoulder will not lower away from my face. My left elbow wont unbend. My face is tingling and numb on the lower left side. My tongue is partially numb. My left eye has not regained it’s vision.

Ive cried 3 times this morning not in woe but in frustration and pain.

And there is absolutely nothing I can do about it. I can’t afford to go see anyone, they wont give me anything to help until my spinal tap anyway, and I dont even know when that IS because I have to jump through BCBS Rings Of Fire to get there.

Im writing because Im angry. Im furious. Im livid. And Im totally at a loss. I understand why people get to the desperate, outrageous places they emotionally get to. I dont always agree with their methods, obviously, but I can absolutely see what drives a person to that point. NO ONE IS LISTENING. You are suffering, the people who are supposed to represent your interests hold ALL the power and they ARE NOT LISTENING. It’s an isolating, desperate feeling.

I feel like I could go on endlessly, quite frankly. This is only the most recent grievances I have with BCBS and our congress’ total lack of concern about the current situation.

My life is ruled by my health insurance. And it’s not a pleasant life.

After reading this blog I do believe there is a way to develop a health plan that handles most needs. The current “pass it now” philosophy is wrong. It’s a Democratic plan that fulfills an Obama campaign promise.

STOP and go back to the drawing board.

1) Develop some “assigned risk” program like we assign risky drivers to car insurance companies in the states….maybe with some subsidy from the feds.

2) Make junk lawsuits nonprofitable….it can be done.

3) With health insurance tied to jobs…mandate transfer ability.

4) Dare I say it? Abortion rights, paid for with our taxes, is a hot issue. I am a firm pro choicer….but sometimes you have to concede an issue to get something done.

5) Give up covering illegals…there is a big loophole in the House Bill that allows illegals to have government subsidized insurance.

6) Send this bill back to the Congress. Let the Republicans have input and give the US citizens a real reform of Health Care.

We can do it…it is hard, but don’t let it be what Congress has as a bill written by lobbyists.

Sue Himel

My husband and I realize that a government run healthcare will not be as nice as the healthcare that we’ve had for the past 20 years. We realize that we might not be able to get an appointment as quickly as we do now. We realize that we might not be able to have tests or procedures as easily as we do now. We realize all of this and more, yet we support a government run healthcare because the system in our country now is such that the person who needs this the most is considered too much of a liability and it denied insurance and thus care.

Can you imagine if the schools were run by for-profit organizations and children who had the hardest time learning, required the most trained and expensive teachers, needed to be in school the longest, were denied an education because they were considered a liability to the school system?

That would be unacceptable, and the system for health insurance/health care is alos unacceptable.

I absolutely understand the resistance of those who are oppose to having “the government” ‘s hand dip into health care.

However, for people like myself, or Beverly’s son (the commenter immediately above your comment), and millions upon millions of others, THERE ARE NO HEALTH CARE OPTIONS FOR US, not even medicaid or medicare.

Why? Because we (1) have pre-existing condition(s), (2) apparently make too much money to qualify or own too much money to qualify (mind you, to quality for medicaid in my state, one’s total networth cannot be more than $2000…… I’m not kidding you) (3) HIP is too costly (4) many MANY states don’t even offer the HIP. In case you aren’t familiar, HIP is the high risk pool for those “uninsurables.”

First of all, we are saying NO before the administration is given a chance at all. We don’t know.

Secondly, frankly, even IF it’s not a good program, for the millions of people, it is still better than nothing at all.

If you have a diagnosis such as Steven’s, it is impossible to buy health insurance. Impossible. We were, obviously turned down for the student plan that was being sold to all students, but we also asked for quotes for Steven, given his situation. Turned down flat.

I’m not worried about the government telling him when or where he can see a doctor. I’m not concerned that his rights as an individual will be stepped on. I’m not concerned that he will have a co-payment or not. I’m not worried that the government could “spy” on his private papers. I’m not worried that he’ll have to give up a choice of a private plan, once he’s employed, for a less sparkly government-run health plan.

I’m concerned that my son will be without insurance, and that will lead to missed scans, inability to secure a surgery, and metastacized cancer.

If I could ask the government to fix one thing about our healthcare, I would ask that all people with truly devastating, life-threatening illnesses who cannot procure a health-plan on their own should be covered under a universal plan.

Please!