Why It's So Important to Be an Informed Patient
BY PAT KILLINGSWORTH
(First posted on Pat's blog at www.multiplemyelomablog.com)
Im constantly harping on how important it is to be an informed patient. I referred to it several times this weekend: Some patients cant even name the chemotherapy that theyre on! Thats fine, as long as nothing goes wrong.
What could possibly go wrong? Other that a mix ups or delays, is it really that important to stay updated about the latest therapies or contraindications? ABSOLUTELY!
Lets use my recent situation as an example. At one point my medical oncologist and specialist couldnt agree on a new therapy direction following my third relapse. Nothing in the text books about that; a half dozen years ago, patients died more often than not before now.
Speculating what wed do if and when RVD failed to control my myeloma, Dr. Alsina at Moffitt recommended substituting pomalidomide (POM) for Revlimid, staying on Velcade and dexamethasone, too. My medical oncologist on the Gulf Coast, Dr. Malhotra, thought adding one or more assisting drugs (Cytoxan and or Biaxin) to the existing mix was worth a try. My new specialist at Mayo Clinic Jacksonville, Dr. Roy, wants to start with a doublet of POM and dex, establishing a new therapy baseline and making course corrections as we go. Others I correspond with believe we shouldnt be messing around; hit it hard using POM, Kyprolis and dex right out of the gate.
Still think a patient doesnt need to understand his or her options? Someone in a mid-sized town thats not seeing a specialistor taking part in his or her therapy decisionsmay not even suspect that theres more than one direction that they can go. Their doctor will simply tell them that he or she is prescribing a new drug or drugs. With no medical standard of care, which drug(s) will they choose? Im not comfortable with a medical oncologist using their smart phone to skim through a couple of therapy reviews, then prescribing a drug combination that they may have no experience administering.
On the flip side, Ive had a number of readers recall that their doctors asked them after presenting more than on option,What do you think? Really? Why, because they dont want to take responsibility for making a decision? Its one thing if they ask an uber informed patient like me that. But a patient and caregiver that arent up to speed?
First relapse? Most docs will go back to what worked in the first place; that would be considered standard of care. But what to do after a doublet of Velcade/dex or Rev/dex stops working? BiRd? CyborD? RVD? POM, Kyprolis or a combination of the two? What about an auto or possibly even an allo stem cell transplant? Or maybe a clinical trial using one of a half dozen promising new drugs?
I rest my case! But there is more to being an informed patients than understanding therapy options. The process of getting the drugs once a decision has been made can be intimidating and cumbersome.
Monday I met with my new medical oncologist, Dr. Luke at 21st Century Oncology, here on Amelia Island. Hes working under the direction of Dr. Roy at Mayo. Were still getting used to each other, but we worked through things and Im pleased with the result. A new dexamethasone script is awaiting a call from Cigna Home Pharmacy. And the order for 4 gm POM21 days on and 7 days offis officially in the system.
Great! I can head home and wait for 21 POM capsules to magically show up at my door? A reasonable assumption. But experience has taught me thats not how it works. I insisted on seeing the practices insurance company contact before leaving Dr. Lukes office. It wasnt easy. I had to ask three times to see their young expediter, named Brandy. You I could tell from the disheveled, unkempt office that Brandy wasnt used to entertaining patient guests.
Im glad youre here. You can sign the paperwork. Brandy said. Paperwork? If I hadnt insisted on her taking the time to meet with me, when would I have done that? Tomorrow? The next day?
Yet there wasnt any paperwork to sign. Apparently theres a glitch in Celgenes (manufacturer of POM) online system. It wouldnt allow Brandy to register me, since I was already in their system as using Revlimid.
Fortunately a 20 minute phone call with a Celgene representative worked things out. I took the opportunity to discuss financial considerations, and the fact that I was part of the Leukemia and Lymphoma Societys (LLS) Co-Pay program. I suggested we use Cignas specialty pharmacy. I brought along a recent letter from Cigna, implying that the company may soon require it. Brandy respectfully pushed back, explaining that the specialty pharmacy they use helps expedite things with Celgene; I was relieved to learn that this wasnt her first rodeo. Brandy was great; she apol0gized for the wait, I signed Celgenes paperwork and I was on my way.
But there are three more steps before I get my capsules in the mail. First, someone from the pharmacy needs to call me to get my shipping and credit card information to cover the co-pay. Still not sure what that will be, but the LLS will cover this part of the cost. If I dont receive that phone call by tomorrow, Ill follow up. Next, Ill need to complete a monthly safety survey for Celgene. Those of you using Revlimid are all too familiar with this. Have you had sexual intercourse with a woman with a womb that can become pregnant? Not since Patties hysterectomy following her first scrape with cancer 18 years ago, but Im flatteredthanks for asking! As Im reminded to use a condomhavent had to do that for a long time, eitherI often feel like a customer talking to a cashier at Target or Kohls during these interviews. Do you have a coupon? They ask, making me feel like Im missing out on something because I dont.
Third and most importantly, insurance will need to approve the script. No problem you say? I heard from the specialty pharmacy that Brandy recommended Tuesday to answer some questions. No insurance approval. Did they have any information about Celgene Patient Support (CPS)? Or the fact that I had been approved for co-pay assistance while using Revlimid, cutting my co-pay from $100 a month to $25? Nope. Was Bramdy familiar with it? I wouldnt know; she hasnt gotten back to me.
I drove over to Tampa to double check on our other house (not sold yet), do some touch up painting and haul another load of stuff back to Amelia Island in our beat up workhorse van. I timed the visit so I could attend the Nature Coast Multiple Myeloma Support Group meeting. Our speaker for the evening? Anthony Giuliani, one of Celgenes Patient Support specialists. What fortuitous timing! Turns out had I gone with my instincts and had Mayo Clinic handle all of this, they would have contacted CPS right out of the gate on my behalf. Counselors there would have already been working with my insurance company to help expedite things. And if Cigna Insurance was taking longer than a few days to approve Pomalyst? CPS would have sent me a free months supply of 4 mg capsules, arriving Friday or Saturday.
Really? I recalled how helpful CPS had been back in 2007 after I was newly diagnosed, providing two months worth of Revlimid while we wrestled an approval out of Blue Cross back in Minnesota.
But most patients in the U.S. dont have access to Mayo Clinic or some other larger cancer center. Theyre relying on a Brandy or specialty pharmacy to help work things out. Getting involved and advocating for oneself could help get you one of these potentially life saving drugs days or weeks sooner.
To be fairuninformed patient or notall of this would have eventually been worked out. But it most likely would have taken days longer to doand I dont want to waste any time getting started on the new drug. Ill follow up and let you know how it all plays out.
Speaking of following up, Ive continued to receive emails asking if we ever found our lost, three legged cat, Aspen. YES! We found her nearby the next day, none the worse for wear despite being gone overnight and weathering several thunderstorms and downpours. Poor thing! She hadnt spent anytime significant time outside for five or six years. I mentioned this in a comment but should have let everyone know via post. Thanks for your concern and caring! Pattie would have been devastated if she had never returned home. Me, too, although Ive obviously been distracted, focusing on my medical complications these days.
Aspens home. I should have good news on the Pomalyst front soon, tooa good omen, dont you think?
Feel good and keep smiling! Pat