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How do I pay for meds and provide for my children?

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#1 amurray


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Posted 21 July 2011 - 03:01 PM

Hello all! I have been trying to figure out my next step in life. I am getting close to graduating with my degree in special education. at the moment I recieve a medical card through the state but in order to get it I must make under $253 a month. i am 27 with two daughters. My fiancee is a teacher and with both income I will not qualify for assistance. I am stuck unable to provide for my children, I have to rely on other's for everything, this is just depressing and I am trying very hard to find a better way. How do you all making ends meet and afford cml care? I am writting letter's in hopes of finding a way. This is the letter I wrote to senator's and even the White House:

Dear Sir or Madam: I have found myself in a desperate and seemingly impossible situation. I am a 27 year old mother of two daughters, a college student, a coach, a fiancée, a daughter, and a sister among other things who has been stricken with an incurable Leukemia. This leukemia is called Chronic Myeloid Leukemia which is treated with medications called TKI's. Although these medicines are a blessing, they are also a curse. While they keep cancer patient's alive, they also are a major burden on the patient's and the families due to the unaffordable cost to keep the person alive. The medicine I am currently on is called Sprycel which cost an incredible $10,403 a month. I was diagnosed with this when I was finishing up my freshman year in college in May 2009. I am now only a few semester's away from graduating with a degree that is useless to me. It is useless because I will be unable to keep myself alive on a teacher's salary. Over the past 3 years, I have remained optimistic and have seeked for ways to provide for myself and my family after graduation. I want to find a way to do this but have come to dead ends at every turn. I have dreams like many other's. I do not dreamed of being a movie star or the president. I dream to be alive to see my girls graduate, work in the public school system, and marry my fiancée. I can not marry my fiancée because he is a teacher and with his income, we can not be married or live together without me being disqualified for Medicaid card. We are God fearing , honest, average American's, who are desperate to find a way to live a semi normal life. Life, Liberty, and the pursuit of happiness are unalienable right under the Declaration of Independence. My Family and I have had these right's alienated by cancer, pharmaceutical companies and government restriction on Medicaid and SSI. My life is on hold and I beg of anyone who can do anything to help myself and other's who face similar situations of insurmountable hurdles to help us clear these hurdles with a little bit of dignity and pride. Thank you, Amanda Murray

Any info, you guys are the experts after all!! Thanks, Amanda

#2 CallMeLucky


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Posted 21 July 2011 - 03:50 PM

Hi Amanda, I'm sorry you find yourself in this situation.  Here are some things to consider.

The big issue here is the fact that TKI drugs are covered under prescription plans and not by major medical health insurance.  If TKI drugs were covered the same as intravenous chemo most patients would not have that much trouble getting their medication.  Any decent job should provide adequate major medical and you would be able to get by.  The problem is that only some employers provide really good prescription coverage.  Prescription policies are addons that the employer provides and they are subject to different deductibles, limits, etc.  This makes it much harder for you to find a job.  Ideally if you could find a job with adequate coverage, then you would be able to move on with things, get married, etc.

Now depending on what state you live in, some states have passed laws in the last couple of years that oral chemo therapy needs to be covered the same way regular chemo is covered (in this case it appears the legislation is aimed at drugs like Gleevec and so while some say Gleevec is not Chemo, the spirit of the law is to provide coverage for a drug like Gleevec, I'm sure there will be some legal battles).  So if you live in one of those states that can be helpful when seeking employment.  However, there are some things to keep in mind.  The law is not passed to protect you, the resident of the state.  It is a commerce law that regulates what an insurance company must do.  So if the company you work for is incorporated in another state that doesn't have the law, the policy under which your company entered into with the insurance company is governed by the state it was executed in and therefore not subject to the law.  Of course it could work the other way if the company you work for is incorporated in a state that requires the coverage, then even if you don't live in that state you could be entitled to the coverage.

Now to complicate things, enter self insured group policies.  Most companies of any size (and I'm willing to bet most teacher's unions) do not actually have insurance policies, for exactly the reasons I discussed above, it is too costly to have to abide by the various insurance regulations.  So instead companies create their own risk pools and self insure.  A company like Cigna provides the network and "administers" the policies, but each month your company gets a bill for all claims submitted and paid.  Now if the company (or union) is large enough to have sufficient risk diversification, then it isn't a big deal when someone gets sick.  On the other hand, small business that try to save money by doing this when they do not have enough employees to sufficiently balance the risk are often floored when an employee gets a major illness and suddenly everyone's rates have to go up.  Guess what, it's not that the rates went up, its that the employer doesn't want to pay for it so they pass the cost to the employees to create a bigger pool of funds to offset the claims.  Sadly the company then looks for ways to push that individual out.  Of course that is not legal but they won't be so blatant as to say "you're fired because you have cancer and it costs too much".  Instead they will look for other ways to push someone out.

Therefore, the only real solution to this is to have regulation passed at the federal level that requires parity between oral and traditional chemo therapy.  A law at the federal level would require self insured companies, which are not accountable to the state insurance laws to cover oral chemo under major medical.  Now for a small business that has not properly risk pooled, the cost is still going to hit them, but in the case of large enough companies and unions where there is sufficient risk pooling the issue will not be a big deal and you would be able to get your drugs under your major medical care which will have the normal deductibles and out of pocket maximums.  This is the only real safe solution for us.  Of course the government does have an incentive to not do this, if they pass legislation that requires parity then gov't programs like Medicare and Medicaid would have to cover oral chemo too.

In 2009 congressman Brian Higgins introduced legislation into the House of Representatives for the Cancer Drug Coverage Parity Act.


I'm not sure what the status of the bill is today, but I strongly recommend that everyone on TKI drugs make a point of writing a letter to Congressman Higgins.

Best of luck Amanda, I hope things work out.

Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%


#3 Marnie


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Posted 21 July 2011 - 04:21 PM

Hi, Amanda. . .

I've been teaching for about 25 years.  Most school districts have health benefit packages that have reasonable prescription coverage.  When you are hired by a school district (I assume you will be applying for a teaching position), you will be covered by their medical insurance plan.  I don't know about private and religious schools. . .I doubt that they have the kind of health coverage that public education has.

I would recommend that as you interview, you do NOT disclose your health information.  At this time (I'm a member of our teachers' contract negotiations team, so I'm intimately familiar with the financial situation in public education) employers would not be excited to hire on someone who may raise insurance costs.  It is your RIGHT to keep medical information private.  By law, they may NOT discriminate against a person based on medical history, but it would be very easy for a school district to hire someone else who has the same qualifications as you, if they are aware that you would be a detriment to insurance costs.

At your interviews, be sure to ask about benefits.  This is a question that any intelligent person would ask.

I would recommend that until you reach non-probationary status (usually 3 years) you play things pretty close to the vest.  Money is tight everywhere, and medical costs are going up.  Districts are looking for any and all ways to cut costs.  Once you've established yourself in a district, and have reached non-probationary status, then be as open with your medical status as you wish.

If you are on Sprycel, google "My Sprycel Support" which will help with monthly co-pays (though just a drop in the bucket).

Good luck, and if there's anything I can do to help, let me know.  Sped teachers are in high demand, so I have no doubt that you'll find a job.  Good luck in the interviewing process!


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