9 replies to this topic

[tiredblood]

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.

[CML2012]

I am three weeks away from reapplying and too was excited about the 7500. It would have helped a lot here. Oh well, not meant to be.

[jmoorhou]

Do apply I got the $7500 grant and didn't have to use it.

[LPJohn]

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

[tiredblood]

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.

[KathyF]

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.      

[LPJohn]

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.

[Billie Murawski]

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.

[hannibellemo]

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.

[Frogiegirl]

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.