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Esophageal Cancer

If it wasn’t for being diagnosed with esophageal cancer I never would have found out that I have celiac disease. While nobody can tell me for sure it is thought that the celiac disease did play a part in me developing esophageal Cancer. While I may be the very small percentage that this happens to it did.

The information below is provided to try an help folks who have found themselves with the unfortunate diagnoses of esophageal cancer. This is by no way comprehensive information but will hopefully be helpful to someone. You can find out more about my personal journey with esophageal cancer at these websites:

Survivability of Esophageal Cancer

Esophageal Cancer is survivable.

When I was first diagnosed I researched survivability on the internet and the statistics did not look good. I honestly thought that I was going to die. After looking at the sources and dates on the information I realized it was old information. Treatments have been refined and detection is getting better especially due to people being screened for Acid Reflux and Barret’s Disease.

That being said, I as diagnosed with stage 3 esophageal cancer – they did not catch it early. I was already having difficult swallowing. That was back in September 2009 and I am still alive. I am still going through treatment as of September 2010 but my prognosis is good – I am expected to survive this and live a long life.

Health Insurance

One issue that I had was that when I was diagnosed was that I did not have heath insurance. Talk about added insult to injury. The doctor who diagnosed me would not treat me because I did not have insurance. I did not qualify for Medicaid because I was working at the time and made too much money. That was the same story for local county programs that were available as well.

After starting treatment I had to stop working which eventually caused our income to come under the limits and we did eventually qualify for Medicaid. It took us getting denied 4 times before we were approved. They did retro back 3 months from the approval date which did take care of the majority of my initial treatment.

Disability

I am currently in the process of applying for Social Security Disability Insurance (SSDI). I have applied and have been approved for SSDI. My case was fast tracked through the system “because of all of the things I have been through”. The compassion list was never mentioned but it only took 30 days from when I applied to when I was approved. I was also sent a retro check for 4 months of benefits. On top of that my 3 kids qualified for SSDI because of me and were approved a couple weeks after I was.

The only down side to this was that about the same time that we found out that the kids were approved we got a letter from Medicaid saying that we were loosing our benefits at the end of the month. We are currently looking into whether the Pickle ammendment does apply to us. If not then we will be looking at our states risk pool. For now we are self-pay which is different for every doctor and hospital.

I will update this section as we make progress in our health insurance dilemma.

Types of Social Security

  • Social Security Retirement - What you qualify for when you turn 65
  • SSI – Social Security Insurance – To qualify you need to make under a certain amount of money every month
  • SSDI – Social Security Disability Insurance – To qualify you need to have work for a certain amount of time and paid social sercuity taxes.

Compassionate Allowances List

Esophageal Cancer is on the Social Security list of Compassionate Allowances. The Compassionate Allowances list is a list of conditions that Social Security has an obligation to provide benefits quickly.

Here are the links about the list and which conditions are listed:

24 Month Medicare Waiting Period

Medicaid and Medicare are two different programs. Medicaid is administered at the state level and Medicare is administered at the Federal level through Social Security. The 24 month waiting period applies to Medicare, not Medicaid.

Through the Pickle Amendment you can retain your Medicaid when approved for SSDI. With this amendment you keep your Medicaid and the income you receive through Social Security is not calculated as income in regard to qualifying for Medicaid. This is not a widely known amendment and most people at the Social Security office do not know about it. We applied and withdrew our Social Security application twice before finding this out because they told us that we would lose our Medicaid.

Pickle Amendment Information:

Note: The Pickle Amendment is implemented at the state level in regard to Medicaid. You will not find anything in regard to it on the Social Security website. You should check your local state’s Medicaid website in regard to their documentation in regard to he Pickle Amendment.