A harrowing and controversial first hand account of a cancer patient's experience with Medicaid. Reposted with permission of my conservative fellow blogger BC at Immizen.com. Perhaps you have good advice about Medicaid or treatment or a good response to some of his more right-leaning views.
My Experience with Medicaid
I’ve heard a lot of discussion on this blog about how wonderful the Patient Protection and Affordable Care Act (PPACA) is and how Medicaid expansion and exchanges will all of a sudden grant access for all to proper health care – an idea, which based on my actual experience, isn’t accurate.
While I think everyone should have proper health care, PPACA is going to need a lot of work before this becomes a reality.
Rather than rehash my talking points on what needs to happen I have decided to relay my experience with the blog.
Unemployed
I lost my job a few years ago and was unable to find a new one, which forced me into working on 100% commission. While I closed some deals my client companies balked on paying me and I did not have the money to litigate so I ended up loosing my car and all assets.
Getting Sick
Then I got sick and while PPACA set-up the ability to buy insurance with pre-existing conditions I didn’t have the $500 per month to pay for it nor did I have the $23k that I had to pay for surgery that would not be covered by the insurance.
My operation was quoted at $97k.
In November of 2010 I started to get an odd pain in my left leg. I didn’t have insurance so didn’t see any doctors initially. I thought I had a slipped disc or other. I started doing yoga to correct the problem.
The pain became extreme in December. I could not sleep more than 2 hours at a time nor could I sleep on my back or front. At this point I had to drop all my 100% commission work and stopped all job searching.
One night I was watching TV downstairs and both my legs full locked like flexed when you get a cramp. The cramp didn’t go away for 1 hour and I could not get off the floor nor could I crawl upstairs into my bed.
In late January I went to an orthopedist who prescribed 30 Percocet and physical therapy/MRI. I had to borrow $300 for this + had to borrow money for the therapy.
The therapy worked for a while then really insane pain set in. In March I had an MRI, which showed a tumor – L2-3 inside and outside of spine. They thought it was a benign nerve sheath tumor.
A family friend is a very senior surgeon at a NY hospital and has raised a ton of money for them as well. So he basically told the neurosurgeon that he was going to do the surgery. Begs the question what happens if you don’t have the contact?
Now I had to get insurance to have the operation. Keep in mind that I was in extreme pain and my ability to walk was disappearing and I was hardly able to walk by late May when I had the operation.
I looked at the pre-existing condition insurance, but had no money to pay for it nor could I come up with the $23k that would not be covered.
I also could not get a doctor to see me on the pain issue so I abused Tylenol. Some days I had to take 10k mg of Tylenol and the safe daily dosage is 4k mg.
If you don’t have insurance doctors don’t like seeing you – even though I was paying cash = full rate.
So I went about getting Medicaid as I qualified being broke without assets and also qualified for being disabled given little ability to walk. The tumor was putting a ton of pressure on my sciatic nerve.
It took 7 weeks to get Medicaid and I had to call my state senator to get it done because they weren’t responsive.
Now when I went to the Medicaid office there was one white guy and a black lady. All 3 of us were patiently waiting, but there were about 7 Hispanic women all with accents/broken English behaving badly and complaining about the wait.
While they may be US citizens they certainly weren’t born here and in this regard I do see validity in people complaining about how immigration increases HC costs.
At any rate, I ultimately got the insurance and had the surgery. I would note that although I had to fight like hell for Medicaid – the safety net did catch me and saved my life.
I just think one shouldn’t have to fight when they’re sick.
The irony is that I have always had good insurance when employed, but never needed to use it.
The Diagnosis
The tumor turned out to be a very rare form of bone cancer called a Chordoma = 300 new cases in the US per annum or 1 in a million.
This is a very slow growing cancer so regular radiation will not kill the cells. They use proton beam radiation, which allows a higher and more localized dose.
So the neurosurgeon in NY said I had to have proton beam radiation 2 months after surgery and he recommended Mass General. UPenn was the other choice that was close by = both out of state.
I spoke to Mass General in June and completed a long survey and then they wouldn’t get back to me. Medicaid covered the procedure, but doesn’t reimburse enough so no one wishes to take it out of state.
So in August I started to speak with UPenn. Finally in October they agreed to do the radiation, which is 8 weeks and costs well over $100k. The proton beam machine needs to be housed in a special building so the building + the equipment is something like $150 million minimum.
The problem is that Medicaid does not reimburse enough currently and if a state goes from 20% of the population to 40% of the population in 2014 then you have a lot of people with insurance that will have a hard time using it. So the problem of the uninsured is not fixed by the bill.
This is what particularly annoys me about the whole contraception issue raised by that gal at Georgetown. If everyone has their birth control or Viagra covered you are making insurance more expensive for everyone particularly those that can least afford it.
While I think many hold this contraception coverage position out of ignorance I can tell you people with this position are unknowingly being very selfish and hurting those that have life and death medical issues.
Pay for your own damn birth control.
Back to UPenn. So with all the fighting and having a life threatening health issue you can imagine how elated I was that UPenn had agreed to the radiation.
UPenn called one day in October at 3pm to confirm the start of the rad the next day. At 7pm I got a call back from UPenn canceling the appointment claiming a problem with Medicaid, but I called Medicaid and they had approved the procedure and cited that hospitals do this all the time because they have patients with better insurance that they service first.
So I then went back to Mass General, which was another fight. They finally agreed to see me in late November, did some tests and then disappeared.
I called the patient’s right advocate at Mass General explaining the issue and this gets doctors into trouble so now the doctors were annoyed with me.
So finally I went to Mass General again in early January and they said they wanted to remove my L2 vertebrae entirely and fuse 5 vertebrae – I have 2 fused now.
The neurosurgeon in NY had already told me I needed no more surgery and he thought they were running a protocol to better understand the disease. Meaning one guy gets rad and the other gets rad + surgery.
As a side note it took me 1 full year for my back to heal so as you can imagine I did not want an even longer recovery.
One of the doctors told me in a waiting room in front of 20 other patients that unless I agreed to his “experimental” surgery I would be dead in 5 years – nice bedside manner.
I read a report out of Nagoya University documenting the success rate on the same exact surgery – 1/3 success rate.
So I opted for no surgery and would have done rad, but no one would do it without also my agreement to their experiments.
So that’s it. I don’t see doctors and don’t have scans and whatever happens happens. And I don’t want to see more doctors as I don’t have the money.
Conclusion
Long story long (LOL) – giving everyone insurance is pointless if it does not reimburse properly and I doubt Medicaid will when you add another 20% in each state to it.
I think without addressing Medicaid reimbursement you will have a two tiered system where those with Medicaid will get lousy or no treatment and those with good insurance will be taken care of.
And without increasing reimbursement rates PPACA will bankrupt hospitals and doctors won’t see people with poor insurance.
And the answer – hey just increase taxes is an easy answer, but I don’t think one that works. You have to get the cost of medicine down and I don’t see anyone addressing this in Congress – either side.