4 replies to this topic

[pammartin]

Several months ago Jamie T. joined the CML group for a short time.  Although she is no longer posting I have followed her progress via another social media site.  Yesterday, she addressed the Senate Committee in Utah about the cost of our medications, CML, outragous co-pays and other problems.  Jamie has CML but also struggles with additional health problems.  I have added a few links and info on this subject.  This discussion in very close to home for me, although I am in Pennsylvania, for the previous15 months my 100 mg Sprycel co-pay was $60.  Beginning January 4, 2013 my co-pay has increased to $850 per month.  Along with these changes, BC/BS is standing firm the BCR/ABL test is experimental and not covered under any policy, at least in my personal situation.  Because I have read over the past year and a half about many who deal with high co-pays, treatment and testing not covered by insurance, and the weight these things add to an already overloaded mess with the CML diagnosis, I felt it appropriate to share.

http://www.sltrib.co...-chemo.html.csp

http://www.deseretne...h-patients.html

http://www.le.state....00/SB0100ht.htm

Dear Family Friends and UTAHN's...  PLEASE check out any of the Daily Newspapers today.  ORAL Drug Parity was NOT only heard in a Senate Committee, but passed unanimously.  IF YOU HAVE a loved one or are a survivor/warrior, take 5 minutes to email your state senator and urge him to vote yes on SB189! (If you do not know what drug parity is, I will be updating my blog soon)  THIS is a monumental time for Cancer Patients like me who have a terminal cancer, and without treatment have a life expectancy of a few years!  However, advancing medical science has a treatment option for me.  The dilemma for every cancer patient taking chemotherapy in pill form is that it is not a benefit covered under major medical insurance.. PLEASE SPREAD and Share!  Our elected officials were not aware of this issue.  BUT are listening and interested!

Message was edited by: Abena

[CallMeLucky]

This is all well and good but in reality these state parity laws do very little to help the majority of people.  I am not saying they are not worthwhile for those it helps, but for most it does not help.  The reason is that most people do not actually have health insurance.  Most employed people have company sponsored group plans.  These state laws do not govern group plans because group plans are not insurance and therefore not subject to the law.  Group plans are governed by the Department of Labor at the federal level.  What is needed is oral chemo parity passed at the federal level by congress.  Unfortunately that is not likely to happen anytime soon.  I will say that the state laws do help inch us closer.  At some point the fed will have to act if all or most states have parity laws but considering a parity law at the federal level would mean Medicare would have to pay for oral chemo instead of the supplemental drug coverage offered by Medicare which is a joke, you can easily see why the congress is no hurry to do this.  Would have been nice if it was in Obamacare, but as far as I know it wasn't.

[pamsouth]

Thanks for the Articles. 

Thank God I just turned Medicare Age.

When diagnosed with CML in 2005 at age 57 yr, we had Blue Cross UAW Retiree Insurance. When my husband retired, our health insurance was Blue Cross UAW Retiree, which was controlled by the Chrysler Union, when he retired the insurance did not cover any specialist or any doctors for that matter.  After much research, I spent most of 2005 and 2006 talking to the UAW and Blue Cross.   I found that the insurance would pay my oncologist visits, if the oncologist would code it with a code normally used for CHEMO OR ORAL INFUSIONS.  After the UAW intervened and after my many disputes,  the Blue Cross rule was'  "I was entitled to 3 follow up  a month,  to Hematologist/Oncology. as long as I was on an ongoing treatment of an Oral Chemo Drug, DX with CML.   I even got a letter from the insurance dispute board stating that "I had CML & Was on A Chemo Oral Drug, and the insurance had the right to interpret the rule, so an exception was made for me, over the coding of the hospitals and doctors".  However the next bump in the road was getting doctors and hospital cancer center to use the proper code, even though I had a written letter from Blue Cross and Blue Cross said they would be happy to talk to the oncologist.   However the oncologist were not use to using this code for an oral target drug (as my Blue Cross interpreted it as a Oral Chemo Drug and Approved it as such) and I had a hard time with the billing of the oncologist, almost each and ever time, a claim was filed, they either refused or had to refile claim, to code it so it would be paid for even the I had a letter from the Blue cross dispute board.  In fact at one cancer center I owed a large bill and they would not code it so that it would be paid for by Blue Cross, But Blue Cross UAW CHRYSLER RETIREE, actually overruled the doctor and cancer center,  and paid it anyhow.  However as every New Year approached it got more difficult in dealing with insurance people who were not on board with this.  So I had to fight for 7 1/2 years to get the oncology bills paid, by Blue Cross UAW RETIREE,  and the billing dept to code it correctly,  it became  a part time job for me, but most all of the oncology bills, were paid by the insurance.  I am also reminded the Chrysler union officials were working in my behalf and putting pressure on Blue Cross to pay.  Thus the phrase CHEMO & TKI ORAL drugs make a huge difference for many people regarding paying oncology and TKI drugs.  Sometimes when you are working for or are retired from with a Union Health Trust, who contracts out to Blue Cross or Medco or whoever, It is the Union or Trust you need to be talking to and putting pressure on them to work for you, they, the Union Trust (VEBA AUTO) are the ones who hold the key. 

I did look at your article on "Ponatinib for CML.  12/14/12 it was granted accelerated approval.  I noted there were 2,449 patients in the trial.  However the treatments were only 281 days in patients with CML.  I was not impressed with the toxic Warnings and side effects.  Such a short study on a small number of CML patients and the median age was 59 years old.  I would want to wait until the Ponatinib was out for several years, unless I had one of the mutations that Ponatinib is used for.  However they are also using Ponatinib  for CML and Others blood cancers, who are resistant to the other drugs or the other drugs are to toxic.

Thanks for keeping up on the articles and passing them on.  I'm sure all of us appreciate it, as things can change, in this fast pace of new drugs and cancer treatment.   I'm still asking Oncologist where is the cure, they always say were working on it, but are quick to add you will be on these drugs for the rest of your life, so I think I would be safe in assuming there is no cure in sight.  I have lost 20 Plus lbs going to Jenny Craig and my glucose is still borderline of around 114, I have dropped the blood pressure pill and take a small dose of two other pills, I am ever so careful what I eat and exercise.  I am beginning to think perhaps it is the Gleevec that has raised my glucose as it was not borderline before Gleevec, who knows.   Now Doctor want an A1c Lab, Makes me wonder here i am ditching other pills because of weight lost and now she wants an A1C and I have been boarderling for several years, I can tell you I'm not taking diabetic pill on borderline labs.  Sometimes I think it is all about the money and greed.  You take more drugs and they create other problems, then more drugs.  I think the drug company sometimes is a multi billion dollar racket over medicating.

Sorry this was so long, but I have had so many doctor appointments and labs these last few weeks, that it has stressed me a bit and I have been venting to my husband but I think it has fallen on to deaf ears.  Although he did get me a pair of nice ear rings and a card for Valentines day, it was 17 years over due.

PamSouth

[JaniePoo2U]

I turned my story into LLS to share.  So far my co-pay is $87 every 3 months for Gleevec.  My major concern is what it's going to cost me when my husband retires (I don't work) or God forbid he should ever lose his job.  I'm always told when I  refill my script that I have to be here to sign for it....if I'm not and it gets stolen or returned I will owe my insurance company the cost of the medication - which is $19,000!!!  That's for a 90 day supply!!!  I don't have a problem being here to sign for it beings I don't work...but what about people who do work...what do they have to do take a vacation day to be home so that they can sign for their medication when UPS comes??  It's just crazy the cost of medications.  Crazy and scary!

[Marnie]

Hi, JaniePoo. . .

I'm a teacher and I have my 3-month supply of Sprycel (nearly $30,000) delivered to school.  The secretary signs for it.  During the summer, I have it delivered to my home.  At my last school, the secretary sent the box down to my classroom with a middle school student.  When I reminded her that if it was lost or damaged, the person who signed it would be responsible for paying the replacement cose. . .she realized that maybe she should either hand deliver it to my classroom or lock it in the safe until I picked it up.  The secretary at my new school is wonderful.  She locks it up and lets me know that it has arrived.  It's a hassle for sure. . .but there is no way I will just let it sit on my front step during the day while I'm at work.