Summary:
Metastatic Breast Cancer patient, Flori Hendron, shares her experience finding and participating in clinical trials and compares it with shopping at her favorite store, where the customer service is unparalleled. Flori notes that clinical trials offer an amazing opportunity for patients but that they still have a long way to go in terms of patient-centricity and appreciation. “Insider scoop” tips and tricks on clinical trials are shared in this helpful and highly personal patient experience blog post.
Nordstroms and Clinical Trials
Whether I’m buying a $30 pair of sale shoes or a $330 purse, Nordstrom always makes me feel appreciated.
From my earliest shopping memories, their staff and marketing and promo materials are upbeat and all-inclusive. Their shoe department is still unsurpassed by most. I’ve spent many rainy days trying on boxes of shoes, finally landing on a pair or two. My sales person offering to take my credit card and go ring me up so I can remain seated. What a treat to be offered that kind of service without having to ask!
My shoes come back, packed in a tall Nordstrom’s shopping bag which is then equipped with a special cardboard tube/carry handle. This gizmo straddles the two loop handles and the slim cardboard tube fits comfortably in one’s hand. This makes carrying the shopping bag less painful on your hand. And it allows you to carry more bags.
When they first opened in Los Angeles, Nordstrom had a pianist playing beautiful music. It was so elegant and added so much to the shopping experience.
Often times they have their own brand of bottled water, which they would offer their shoppers on warm days. They really practiced Customer Service and in a very short time they became one of my favorite places to shop. They knew how to make their customers feel welcome whether we’re going to browse, purchase, or return, they treat us the same.
Comparing a potential life-extending or life-saving clinical trial to shopping at Nordstrom, might seem like apples and bananas to some. And had I not experienced both, I might tend to agree.
But the thing is, in both settings without ME there would be no THEM.
It’s only in one of these two settings that I am treated with constant appreciation and as if the “provider” values having me in their store, in their fitting rooms, in their clinic, on their trial.
At Nordstrom’s from the moment I arrive I feel welcome. In my clinical trial, from the moment I arrive I feel judged. The list of trial prerequisites is staggering. In addition to having to have a terminal illness, I have to provide stacks of records, give my blood, take multiple scans because my most recent scans weren’t taken at the trial facility and therefore somehow, they’re not okay.
It’s all about the sponsor, and not about the patient. My blood work must be taken at the trial facility, even if that is super inconvenient. There’s really no reason my blood couldn’t be drawn locally, a few blocks from my home, and sent to the lab for the appropriate results. But the reason is the financial arrangement that the trial sponsor works out with the trial site and reimbursements and services they are paid for. Patient advocates are working on “decentralizing” clinical trials, but for now the rules remain.
At Nordstrom’s I can buy shoes at The Grove and return the shoes in Century City. Sales staff smiles and I am welcomed. Nordstrom has worked out the money and credits behind the scenes, to make things easy on their customers.
There are three phases to most clinical trials and you can find information about these online (see for example, Ancora.ai’s blog on the subject).
There are also three phases that WE, the clinical trial “customers” need to understand. These are not anywhere on the internet. You can learn them through online support groups, or through friends, though other advocates, or as I learned, through trial and error. Pun intended. I will call them the Insider’s Scoop and share a bit of what I’ve learned.
CLINICAL TRIAL INSIDER’S SCOOP STEP 1 – Clinical trials are an opportunity! Read that twice.
Step 1 is understanding the value of a clinical trial. Clinical Trials are opportunities and I mean that 100%. Unfortunately, too many people still think clinical trials are a last-ditch effort. Clinical trials are anything but that. Standard of care treatment will always be available. Access to a promising, novel, cutting edge clinical trial will not always be available. It’s important to understand how a clinical trial can be an opportunity to extend your life.
One example is here. Ado-trastuzumab emtansine (T-DM1) was the first antibody-directed chemotherapy approved for a solid malignancy (her2+ metastatic breast cancer). A “smart chemo”, the payload released when it binded to the HER2+ cancer cells.
Patients who enrolled were given access to this trial drug, enjoyed early record success in both disease-free progression and better QOL compared to the chemo arm. This was truly novel and cutting edge. Now the drug is FDA approved. Called Kadcyla, from Phase 1 through to FDA approval has taken close to a decade, except for the people on the clinical trial. They were permitted to continue receiving therapy as long as it was working (this is often the case in a trial). You can read more about these outcomes on Ancora.ai’s Glossary if any terms are not clear, and you can also filter for expanded access programs when you search for trials on Ancora.ai.
CLINICAL TRIAL INSIDER’S SCOOP STEP 2 – Finding the trial drug needle in the haystack.
The second step is how to find a good clinical trial. Clinical trials are not mainstream/automatically considered for you, but this doesn’t mean they aren’t a good idea. If you are lucky enough to have an oncologist associated with a large university or teaching hospital, they often have their fingertips on the pulse of latest and greatest clinical trials. Going to annual breast cancer conferences (SABCS, ASCO) is another way to become familiar with the most popular researchers and doctors in your subtype of breast cancer. Also a great way to meet Breast Cancer Patient Advocates!
Many search for trials on www.clinicaltrials.gov, a good place to look although it’s very overwhelming and not always up to date. Recently a few new search engines have popped up to help us look for clinical trials.
Ancora.ai is a good one, as is breastcancertrials.org. Breastcancertrials.org will be specific to your cancer subtype, including another site for metastatic cancer. On Ancora.ai you can search for other types of cancer, not just breast cancer. This can open up opportunities for finding “basket trials” (tumor agnostic) as well as disease specific trials. Ancora.ai also automates eligibility-criteria matching so you don’t have to read through a lot of medical jargon to find the right trials. Anyone can use the search to get to relevant trial results in less than 5 minutes. The search results are comprehensive (pulled from the national database), and unbiased (Ancora.ai doesn’t promote specific trials).
Of course, all of the searching requires a lot of focus and persistence especially hard at a time when our disease is having progression and we are likely feeling scared and anxious. If your doctor is low on time and is not familiar with trials, you might have to make your case. This doesn’t mean trials are not a good idea, but they might require more effort from you if you want to pursue them.
When I was searching, I made a list of the top (5) trials I would consider and printed out the pertinent information. I then scheduled a consult with my oncologist to review. She helped me hone in on what she thought would be the top (3) trial candidates. I then scheduled appointments to meet with the trial doctors. Which brings me to the next step of getting a timely appointment.
CLINICAL TRIAL INSIDER’S SCOOP STEP 3 – Clinical trial access relies on the patient being EXTRA pushy and persistent. The squeaky patient gets oiled.
Once you’ve identified a couple good trial choices, the next step is getting on to the trial. The most effective way to self-advocate is to reach out to both the sponsor and the investigational oncologist. Each clinical trial has a principal investigator. Sometimes a trial is only at one facility, sometimes it’s at multiple facilities. Understanding the different phases of clinical trials is different than understanding the different steps of getting on a clinical trial.
I have had very good luck in creating a one-page overview of my 24 year cancer health history, my prior treatments, and a note about why I think I’d be a good candidate for the trial. I email this overview to the sponsor asking them to put me in touch with the investigative doctor. If the investigative doctor is listed, I will email that person as well, and follow up with a call asking for an appointment.
When told the first available appointment is a month away, I ask to be put on a cancellation waiting list, saying I do not have a month to wait. I ask if I can phone every morning to see if there are cancellations, and I do so. I also explain I’m calling about their clinical trial and don’t have a lot of extra time. Persistence is the name of STEP 3. Ancora.ai can also help with this step, as they’ll contact the site and track down the right contact person on your behalf.
Get comfortable saying that you can’t accept that waiting time and ask to be put on a waiting list and ask to have the doctor call you. Ask if the doctor has a PA you can talk to and just straight up ask how you get information about this trial sooner than waiting two months! This is when you play the cancer card with all the nice schedulers who don’t realize that your biological LIFE clock is ticking.
STEP 3 takes leaving your comfort zone and being politely pushy. Keep steady pressure on, they are busy but this is our life we are fighting for! Lock eyes on the doctor and call, email and send flowers if it will get you an appointment.
Once you meet with the trial doctor and they’ve had a chance to examine you and review your history you should have a good idea of whether or not the trial is a good fit for you and why. This is often when the hoop jumping will begin. You’ll be asked to sign consent forms and you’ll be given a schedule which shows all the scans and infusion or clinic dates.
To see if you can be accepted into the trial, a scheduler will call you and assign times, days and dates to a variety of scan procedures without taking into account your schedule or your life or your needs. And if you complain, you will get pushback. So you have to be resigned to being treated poorly even though you are the “customer”!
And here we are full circle back to Nordstrom and their customer service model. Nordstrom will bend over backwards to get a $12 lipstick delivered to your home and appreciate you the whole time.
Big Pharma can’t be bothered to oversee budgets that they’ve allocated to different institutions to make sure that the customer/patient is being treated properly. And unless we complain to the sponsor they really don’t know our experience or if we are being treated properly since the sites are running the trials day-to-day. The sponsor doesn’t know if money budgeted to give us a lunch on infusion day is actually being used to give us lunch and if money budgeted to pick up our parking is actually being given to us or offered if we do not ask. We constantly have to self-advocate.
Although the vast majority are in the business of cancer to help, to heal and cure, there are just as many who are in it for the bottom line profit and that’s fine. I don’t mind if everybody makes money but at least treat me and appreciate me the same way Nordstrom does – this is my life and not a pair of shoes, so shouldn’t the bar be even higher?
Just this year the FDA finally started a pilot program giving the patient a direct voice. Some other trial search sites also allow a rating. Accountability is starting to happen!
I’m all for this. Nothing about us without us. Nordstrom’s sends an independent email survey asking how do you like your new lipstick? How did we do? If you have a minute please fill out the survey and rate your experience. We appreciate customer feedback. FOR A LIPSTICK!
Just once I’d like a survey like that from Pharma! I want everyone to be held accountable. WE are all supposed to be on the same team! But when some of us are earning a lot of money on that team and some of us are slowly dying, and are still having to pay our own parking, it doesn’t feel like a very fair team.
I hope for continued improvement to the patient experience in all aspects of cancer survival. Especially in the area of “customer” service and appreciation.
And I hope Nordstrom survives the pandemic so one day I might shop there again. And that my beautiful daughter and I might enjoy lunch upstairs in their restaurant, after a day of mother-daughter shopping and such vital retail therapy.
About the author:
Flori Hendron was an artist, designer and 24-year breast cancer survivor, including the past 13 years living with Stage IV MBC (metastatic breast cancer).
A strong advocate for the cancer community, Flori developed and facilitated an art program at Cedars-Sinai Hospital. Based on Joseph Campbell’s Hero’s Journey, Expressions of Hope & Healing© was an engaging and safe space in which Flori taught other cancer survivors how to connect with the healing process through art expression.
Flori believes that our process holds great value and that how we deal with life is more important than how life deals with us. She was among the first class to be certified in Social Emotional Arts through UCLArts & Healing.
Flori spent most of her early career in product design, brand development, and marketing. She is the recipient of numerous product design awards and is well known as an innovator in color, styling, and eco-product design.
Advocacy work includes TheRightDose.org, a Patient-Centered Dosing Initiative and The Breast Cancer Brain Metastases/Marina Kaplan Project to accelerate evidence-based research for patients living with brain metastases and leptomeningeal disease.
In her free time, Flori enjoys West Coast Swing dancing, creating her own work as an artist, writing short stories, and creating memories with her family and friends.
Social Media:
Twitter: @CANsurvive
Facebook: Flori Smith
Website: beingflori.com