Lynparza/Olaparib - NON BRCA1 OR 2

adfab

Hi Everyone;

I was diagnosed in Dec 2017, Stage 3C ovarian. Had 11hr. debulking (9cm tumour on my uterus) followed by chemo and was NED by end of May 2018. CA125 was at 7 when I completed chemo. Prognosis looked very good. I had a reversal of my ileostomy in July, port removed and I was hopeful to not reoccur. Unfortunately, in Nov of 2018, my CA125 began to climb rapidly and a CT scan showed a new 4.2cm tumour on my liver. Because I was still chemo sensitive (under 6 months, I was 7 months) I began chemo again Jan 2019. Last month CT showed tumour down to .05cm and considered stable. I am frustrated by the reactive process of just monitoring again to reoccur, knowing the window between reoccurrences typically gets smaller. If I reoccur before 6 months, chemo would not be an option. Wanting to be more proactive about this, I inquired about a 'maintenance' option. I am NOT BRCA1 or 2 positive but did test positive for PALB2 (Partner and Localizer of BRCA2). Currently Lynparza is NOT covered for my mutation although my doctor feels I may benefit from this drug. My goal is to extend my progression-free survival. OHIP (I'm in Ontario) would NOT cover me for this drug. I do not qualify at this time for any trials and I do not have ANY private medical coverage available to me.I decide to proceed paying out of pocket. I started Lynparza this week and am paying over $4300/month for it. I am very fortunate that I can afford this and I am hopeful that it works and eventually there will be coverage for this for non BRCA1 and 2 patients. I fought hard to get this drug discounted and this cost is AFTER the discount from AstraZeneca. I was initially told it would cost $9000 /month.

So my question for any of you is: Has anyone here taken this drug who is NOT BRCA 1 or 2 positive? If so, any success with this drug? Obviously, I will remain on it as long as it works and I am financially able to do so. I would love to hear from anyone who has experience with this drug outside of BRCA 1 or 2. Naturally, I don't want to spend thousands and thousands of dollars only to reoccur shortly but am willing to do whatever is available to me to prolong living with this disease. Thanks

Laurie

I messaged you

Laurie

Just wondering how you are doing on lynparza

Kiki

Olaparib is covered under the PSHCP (public service health care plan) for non-BRCA mutations (such as PALB2) and  even for BRCA-negative, if prescribed; no documentation is necessary. The plan covers 80%, there's a maximum $3000 annual co-pay, then the rest is covered 100%. So, for people in your situation, try to get a job at the federal government or have your spouse get a job there. Here's the eligibility criteria: https://www.njc-cnm.gc.ca/directive/d9/v9/s67/en#s67-tc-tm_1

Note that the PSHCP will cover only up to $8800.26 for the prescription and dispensing fee, as that's the limit for "reasonable and customary charges". Note that if you can pay in cash (with a cash back credit card,), you can get a 20% discount through Astra Zeneca's patient support program if you use the mail-order Bioscript pharmacy (Astra Zeneca's patient support program has just changed to Bioscript from Bayshore.)

What's your pharmacy / How did you get it for only $4300? I know that pharmacies can charge whatever they want; Shoppers Drug Mart charges $9409.45 for a full dose (600 mg/day) (note that's $500 over the max price covered.)

The oncologists speak highly of Olaparib, as it extends PFS for two years or more; they think it's much better than letrozole as a maintenance option.

Olaparib is also available in India as "Olanib" for about $1000/month for 600 mg/day. If you have Indian friends with contacts in India, they can perhaps find you a trusted pharmacist who can get it for you.

adfab

@Kiki I don't know how different patients pay different amounts. I looked into pricing for the drug and it is all over the map. Have chatted with fellow patients and everyone seems to be paying different amounts. I friend of mine spoke with a pharmacist in Lebanon and was told the cost would be approx. $1000/month as well. I looked into getting Lynparza dispensed from another country but was advised against it from my oncologists. They do not condone receiving drugs from other countries as they do not 'trust' that the medications are authentic. If I wanted to go 'rogue' and acquire the drugs I could, but would be jeopardizing my treatment if I chose to self-medicate. It's very frustrating dealing with big pharma costs in Canada, especially for drugs that are approved but not covered by our national  health care or other assistance programs. If you don't have access to medical insurance whether through employment or private, it's very financially burdensome. Putting a price on one's health is an awful situation to face.

MarilynOCC

@adfab @Kiki @Flowergirl
Hi,
I understand your frustration and confusion around this issue.  Unfortunately, you are correct about the challenges in  getting Lynparza for non BRCA ovarian cancer and the fact it is not publically funded. 

The original clinical trials for Lynparza were for BRCA positive disease and based on the results of these trials, Astra Zeneca applied to the federal government for funding approval for BRCA positive disease only not non BRCA. 

Yes, some doctors may recommend Lynparza for non BRCA but, as you have outlined, the individual has to pay for it themselves, or through private insurance, if possible.  Most people do not have the financial means to pay for the drug themselves and private insurers all have different criteria so some companies may cover it and others will not.  No, it doesn't seem fair.

There is another PARP inhibitor called Zejula (niraparib) that is not restricted to BRCA positive disease.  It is not yet approved for public funding but we are hopeful that it this may happen in the near future.  

adfab

Thanks for the info @Marilyn. I looked into Zejula, as I know it’s approved for use in the U.S but was told it’s wasn’t available yet in Canada. Hopefully more options will be available soon.