Please help my cousin's friend--

[DanaRT]

Hello all, I have not posted in a long time. Today was a milestone for me. My port was removed this morning.

However, I am posting this because there is a woman who needs assistance in getting further treatment.

How can this happen? I have Anthem BCBS...

This is the desperate message she sent --


"I need everyone's help in a nightmare situation. The chemo drugs I was on have stopped working. My onc. wants to put me on a combo of drugs called TYKERB (GlaxoSmithKline) and XELODA (Roche). These drugs have a good and proven track record for treating my type of BC. Unfortunately, I'm not covered by my current insurance because they don't cover brand name drugs or specialty pharmacy drugs (thanks Anthem BCBS). I've applied to numerous financial assistance programs and am told I don't qualify because they only cover assistance with co-pay. These drugs are almost $6000 per month. Obviously, I can't pay for these out of pocket.

Now here's the thing. Sometimes breast cancer patients are put on these drugs, get the prescription filled and then the drug stops working for them and they then have a small supply of the drugs that they can't use. Usually these drugs get thrown in the trash. Sometimes they get "donated" to cancer clinics so they aren't wasted, but cancer clinics can't accept them because of legality issues. What I'm asking is that if you know someone who might have been on these drugs then please forward them my name & number. Also, please tell everyone you know this story. What I'm asking you to do is technically illegal, so if you're not comfortable doing this then I completely understand. Sadly, for me, desperate times call for desperate measures.

Thank you for your time,

Kim

Thanks for any help you can offer. This just doesn't seem right.

Take care and big hugs,
Dana

[Bill]

Dana, this brings back alot of memories. I'm not going to spend alot of time editing and trying to write a smooth-sounding tale here, just the facts as best as I can recall. Nikki and I had Anthem/BCBS and her onc. prescribed Xeloda and it was denied. I began buying it out-of-pocket after a few days while we appealed, and at the same time, Nikki was in touch with Roche. Our NP had told us that the pharm. companies will often cover the cost of meds. in hardship cases. At the same time, our onc. was contacting Anthem and trying to find out why the Xeloda was denied. It turned out that Anthem only covered Xeloda if the patient was on a Taxane and it had failed (patient showing progression). Has Kim been on a taxane and showed progression? I'm assuming so. We were paying over 200 dollars a day for six pills/day. Scary math, but what can you do? I went to the pharmacy daily and got her six pills, each day hoping for good news from somebody. After about a week and a half, the representative from Roche said that they would donate the meds for Nikki! Almost on the same day, our onc. was able to convince Anthem that all other treatments had failed and Nikki needed the Xeloda. It was approved. Nikki called the Roche rep. back and told her that our insurance would cover the Xeloda and thanked her. The Roche rep. was insistent that if there was any problem whatsoever with our insurance that Nikki should call her back. They were willing to help. I wish I had gotten her name. Nikki was so impressed with her. She must become "the Warrior". Attack this problem from all directions at once. Call the pharmaceutical companies daily. Enlist the aid of her oncs. and NP's and chemo. nurses and everyone who will listen. Her advocates and friends need to tell anyone pertinent to the situation her story. When I went to the pharmacy, I told Nikki's story to all of the pharmacists and techs., and enlisted their aid, not conspiratorially, of course, but most people want to help. The Xeloda was denied. "I'm sorry sir, the prescription was denied." "Run it through again" "Denied" Go back every day and run it through again as many times as you can. You must be patient, though, at the same time, with your pharmacists and techs. behind the counter. They are your allies in the battle. I donated all of Nikki's meds. to a facility and they were used. I'm sorry about the rambling.

I am so sorry for your cousin's friend. This is awful!! I don't have any of the medications she seeks. I have a few suggestions that she might try. 1) She could ask the same question on www.bcmets.org. There may be someone on that list who has extras or who knows how to get the medications for free or at reduced cost. 2) I believe that Tykerb has a program called "Tykerb cares" that helps supply Tykerb to patients. 3) A woman on the youngsurvival website set up her own site at www.armyofpink.org that includes links to financial resources for breast cancer patients. Although I haven't looked at the site closely, it appears to compile a lot of information regarding financial assistance, including information broken down by state. 4) Speak to a social worker at her hospital. The social worker might have any idea of how she can get these medications and might be able to review her health insurance policy to see whether these drugs should be covered. 5) If her insurance is through her employer or her husband's employer, the benefits department of the employer might be able to check whether the prescriptions should be covered under the policy. It doesn't seem right that they are not covered. 6) Another woman with metastatic breast cancer has a blog at www.assertivepatient.com. She had an entry in January 2009 where she ponders how to pay for Tykerb. Her blog does not include an answer, but it might be worth contacting her to see if she figured it out.

Hopefully, someone else will come along with better ideas. I just saw Bill's post, and, as he points out, her onc's office should help find out why the coverage was denied.

Good luck!

Jill

[vickie h]

Tykerb has a compassionate care program and will provide the drugs needed if hardship is the case. I am certain of this. Please call them and ask to speak to someone in "compassionate care program". Most of the companies, ie Glaxo Smith Kline, Roche, etc all have these programs. People just aren't aware of them. You will not be turned down is yours is a hardship (you cannot possibly afford them and eat and have a home at the same time.
I have Xeloda and Tykerb and will be happy to send them to your cousin, but it will not be enough to complete her entire program. I have about a months worth of each. In the meantime, you can start contacting these companies and get the ball rolling. Legal or illegal, she needs to be helped. No law should dictate whether we get to live or die because of finances. Shameful! Please let me know where to send them. Much love, Vickie

[DanaRT]

I am touched but not surprised by this groups' generousity with answers, suggestions, knowledge and even offering to send some of the drugs! Thank you so much. I cut and pasted each of your responses and sent them on to Kim. My hope is that she joins this forum and perhaps she already has.
Thank you Bill, Jill and Vickie--without people such as yourselves some of us would have no where to turn! You've offered much hope. Kim will need to be persistant. I offered to make phone calls for her as I too am covered by Anthem. HIPPA could present a problem, she's have to include me....
Love,
Dana

[Believe51]

Dana, Tykerb does care and will be able to help her. Ed got both the Tykerb and the Xeloda for free because at the time we were in between insurance coverages. Make sure she can set aside one fabulous nurse as her advocate. This nurse will be responsible to help her jump through the hoops that she needs to. We did, however, donate the rest of these 'unopened' bottles to our OncoMan at our Cancer Clinic. I wanted them to go to someone that was in the same position as Ed and Kim.

Be assertive and do not give up. I am certain that things will work out for Kim. Make sure you set up that advocate, this is a good idea for all situations and would be a go-between from 'nurse to doctor'. Helps with communications also. Keep us updated Dana, thanks>>Believe51

[vickie h]

Kim, They're on their way. call the drug companies before you receive my package and talk directly to them . Good luck and let me know when you receive them. I'm honored to do this for you. Much love, Vickie

I have tried all of the drug companies assistance programs and I don't qualify because either #1 - I'm insured, #2 - they only cover co-pay assistance, or #3 - I make too much money (I don't even make enough money each month to pay for these drugs, so how can I possibly make too much?!) I'm working on appealing my insurance company and putting pressure on the drug companies, but these could take weeks if not months. In the meantime, I looking for anyone who can donate their unused Xeloda or Tykerb to tied me over until I can get this straightened out. My email is kimmfernandez@gmail.com if you happen to have either of these drugs. Thanks again, for everyone's help and thanks especially to Vickie! You're all incredible people.

[Believe51]

I see the OncoMan on the 23rd but will call for help tomorrow. Let me see if I can get some things together for you ASAP. This may buy you the time you need during the appeal.>>Believe51

[tricia keegan]

Kim, I can't help you but hope you get the meds you need. I do know if anyone can help it's these wonderful caring people right here!