First and foremost, I want to say that I am grateful for the LLS copay assistance program. It is a huge help. With that said, the first time I applied and was approved, the funding amout was $500. Almost immediately, after I was approved, the funding amount went up to $2,500. So, I had to wait until the new year to be eligible to apply again. So, I apply while the funding is purported to be $7,500. I'm all excited because this would help me so much as I could use the money I would have used on the chemo and insurance premiums on my twins education (they graduate HS this year) and needing to care for aging/end-of-life parents. On the very day, I'm approved, it appears the funding went down to $500. I'm sort of bummed out, but I guess I'll get over it.
LLS copay assistance program disappointment
Posted 14 March 2015 - 06:59 PM
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)
Posted 14 March 2015 - 09:22 PM
Do apply I got the $7500 grant and didn't have to use it.
Posted 15 March 2015 - 07:18 AM
I have written LLS to clarify, this may be an error and the $500 is for a new program for Transportation expense that they just recently came out with
Posted 16 March 2015 - 11:28 AM
Unfortunately, it is not transferrable. Although you were awarded the $7500, no one else can receive your award if you don't use it is what I understand from LLS.
Posted 19 March 2015 - 06:52 AM
The $7500 was available to those lucky enough to apply or reapply between October and March 13. Now it's dropped significantly to $500. For those of us reapplying for copay assistance, our dates for reapplying are assigned to us by LLS. It's not our choice to wait. My renewal date is July -- and I could not renewed between Oct and March.
The LLS had a huge amount of money for CML. It would have made more sense -- and have been more equitable to all patients -- to have the amount available per patient set at a lower amount -- say, $2000. That would have stretched the money to last longer -- and perhaps be available to all.
The fact that the LLS designated a select group of CML patients -- those applying or reapplying between October to March 13 -- to benefit from this money while excluding the rest of us is grossly unfair.
When I phoned the Copay Assistance group, the woman I spoke with said that she and others were shocked by the significant decrease in available funds in such a short time. Me, too!
Congratulations to those of you who were able to get the $7500! I'm happy for you!
The LLS has done a lot for me and all of us with blood cancers -- and I will always be grateful. I volunteer for the Society and will continue to do so. I'm a big fan!
However, this copay issue bugs me. I wrote to my local patient service manager and to the copay program expressing my unhappiness -- and I encourage you to do the same.
Posted 19 March 2015 - 09:27 PM
Kathy I received my response and you are correct. If enough of us write our comments on this then more people will be helped keeping a levelized assistance instead of a hit and miss on $500 or $7,500 and one's timing/
I too am very appreciated of the assistance as I received $2,500, but if assistance was kept at $500 then 5 people could have been helped. We are all in this together and would have no problem sharing.
Again, I want to graciously thank the LLS and all it's generous donors for their help
Please write your views if you feel strongly about this.
Posted 20 March 2015 - 12:11 AM
About 6 months after my dx I called the lls for something for some reason they didn't have my name (I didn't know they were supposed to have it anyway) I was told I was entitled to $500.00. I was very fortunate to have good ins with a low co-pay so I didn't want to take any money I asked them to give it to somebody else who really needs it. I asked for a form in my name so I could document this, I never heard from them again. I imagine they just put it back in their general fund.
Posted 20 March 2015 - 06:08 AM
If you use a specialty pharmacy (and don't most of us) please be sure and ask them, too. I've been told by mine in January for two years in a row that they could lower my co-pay to $25 a month through a co-pay assistance program. My drugs are paid through our major medical and our plan only has a $1,000 out of pocket and I FLEX for that so I told them to give it to someone who needs it more.
I'm using HyVee Specialty pharmacy (very small) but I will try to get more information if anyone would like me to. I don't know who the assistance program is through. I think it must be BMS for my Sprycel but I'm not sure.
I will say that I've used several specialty pharmacies and this is the first one who has proactively offered me this.
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 21 March 2015 - 01:18 PM
So when are you saying is the best time to apply for a first time applicant? October? Just wondering.....things don't always go as planned.
Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.
Nov 8th 2017 went off Tasigna
Dec 1st PCRU off TKI
Jan 5th PCR Detected .0625
Feb 1st PCR Detected .7815
Added 8-6 grams Curcumin daily in Feb
March 3rd PCR Detected 3.2646 YIKES!
stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)
FYI I'm not done trying for my last little one.
1 user(s) are reading this topic
0 members, 1 guests, 0 anonymous users