Here's a
diary-like recording of PAL's experience as an exhibitor at the ASCO
2004 Meetings in New Orleans.
But first a big thanks for your support and encouragement! And especially for the volunteers that made the trip to New Orleans to help out
directly! Thank you, Jim, Jim, Lynn, and Allan!
JUNE 3
 Starts with a long walk to the center in New Orleans’s heat and humidity. Must check that shipped materials arrived. The PAL exhibit is on the North-east corner. Walk-though reveals a World’s Fair atmosphere in the making. Laborers, ladders, wires, the pulse of tools. Crates and cranes. Two and three-story gloss neon structures emerging. Celebratory. Contrasting with FDA
white paper on the Critical Path ...
Click images to enlarge
The FDA report carefully examines the
critical path of medical product development --
the crucial steps that determine whether and how quickly a
medical discovery
becomes a reliable medical treatment for patients. - PDF
2004
Find our shipment transformed by travel. Resembles a sleeping bag; collapsed on one end and bleeding popcorn-packing on three sides. The PAL sign, vinyl, is crushed along the top end. Hard wrinkles from end to end. Maybe ironing will fix? Must call Lynn. Can we iron it? Can you bring an iron? Lynn replies calmly: Why not walk it back and iron in your hotel? :
)
JUNE 4
 Arrived early to put up the sign and set up the exhibit items. This if for the public:
What’s lymphoma? The Beads of Incidence. As it happens beads are Mardi Gra celebration objects. Workers stop one-by-one to examine. “These are new cases of lymphoma in one year. Here are some individuals. Each bead is a real person …,” Repeated many times. Gladly. Getting warmed up to one task. The mission of awareness. Recalling another quip from Lynn:
“Call them Beads of Sweat.” True.
Lynn and Jim Myers arrive from Dallas. We’ve never met before in person. Feeling grateful and very comfortable from the start. Out comes the pop-up. The PAL sign is looking even better now against the black curved panels. After setup we met again at the Advocates Reception. Wine and sushi superb provided by PLWC, the patient support division of ASCO.org. Dinner later. Excellent food and time to talk. I think I’ve known Jim and Lynn forever already.
JUNE 5
 Arrived early to set up to find the PAL sign is on the floor in a heap. Panels came away from the frame. But fixed and reinforced easily. Jim Shaw arrives from PA to help out; as does Allan Marson our co-founder. He arrived late last night from CA suffering a five-hour delay in Denver. We have a small army now, allowing for shifts and breaks, and giving me opportunity to wander and find contacts of interest. Drug sponsors, CRO (who design studies for drug sponsors), Imaging
companies, etc.
Even in our remote position on the floor, visitors come by, sometimes in twos and threes. “Are you a physician? Develop therapies?” Name tags assist.
Some folks are just cruising for giveaways. "Free beads?" Sorry, no. That's a display. See the poster here showing the rising incidence of lymphoma? Doubled since 1973 ... Each bead a new case; a person. Sometimes shifting to one plausible explanation: SV40. Sometimes showing a card: a photo of Jama, Joanne, Page, Tony .... with treatment history. Other times the giveaway hunters just move on too fast.
You may be interested in these brochures: What's Lymphoma?
and Preparing for Doctor Visits.
Preparing for Doctor Visits - PDF
and What's Lymphoma? - PDF
The talk for physicians went something like this:
“Do you work with lymphoma? We help you to find studies easily. No login. No typing. Nothing comes between you and the information. Look. Here’s you can find trials by subtype 1, 2, 3. Click, click. Or by setting: frontline, refractory, phase, age ...
Here's our brochure: Locating Clinical Trials for Lymphoma.
Locating Clinical
Trials Specific to Lymphoma ~ By Disease type - PDF
If by treatment type, we also link you to data to see how strong or weak it is. (One stop shopping.) We also list trials of interest here. We can do this because we have no conflict of interest. We’re independent of industry funding. We’re not infallible of course. Our advisors help make the list.”
“And this is unsolicited advice for the lymphoma patient community.
Optimizing Patient-Physician Consults. Suggestions from cyberspace. It’s about how to improve the consult. Make it more positive. Patient perspectives.” Interesting expressions. “Nobody likes being edited.” : ) We point to a few examples:
"Please read my chart before you come in."
Smiles.
Optimizing Patient-Physician
Consults - PDF
For care providers who were most interested we asked: “Have you an interest in being an advisor? Easy. We email you web updates or policy ideas. If busy ignore. If an idea or suggested comes to mind, you reply with a note.”
Note: One very nice physician took a long time and explained why it’s difficult for community docs to refer to trials. “It’s the paper work. I used to work in the Cooperative Groups, so I know both sides. …” But then she adds: “And doctors don’t want to give away *their* patients.” I said nothing, but it never occurred to me before that the relationship was considered one of “ownership.”
Our talk for drug company representatives and CROs went something like this:
As you know, patient participation in trials is essential to making progress against the disease (and not said but understood: profits). How else? So this is the core part of our mission. It must start with education: Helping to understand the disease (What’s Lymphoma). The true risks of the disease – it varies. The basics about treatment types. Risk/benefits – specific to setting.
We also educate about investigational therapies. Link studies to indications, etc. Next, we make it easy to locate trials. We want to empower patients so they can have informed discussions with their physicians that includes considerations of
clinical trials. We also make it easy for physicians to find studies. Importantly, because we are independent from industry funding, we can list
clinical trials of interest …
The final component is trial
design. You see we know patients are looking at and reviewing studies, but not often enrolling. We have compiled the reasons that patients give, and others. In in our guidance package for the industry
in our brochure: Increasing Participation in Clinical Trials. Unsolicited advice. Perspectives on trial design.
We think one key is matching research objectives to patients survival goals whenever possible (One life to experiment with.); and to get scientists or MDs with lymphoma to consult on study protocols in the design phase. We also advocate for community docs to refer to trials: Provide incentives for them to do so. Make it easier for them to administer study protocols. Centralize paperwork, etc.
If each community doc referred four patients each year? There are examples of protocols that would be attractive to patients in our brochure. And we advocate for the NBN. Dr. Barker is doing a talk on it. We think the rationale for NBN is compelling. Sometimes the example of pilot study is used. Why toss a therapy that gets a 10% response in a pilot? That's a therapy that can help 60,000 individuals, potentially, if you knew how to predict who the treatment was for. ... It’s all in this brochure.
Increasing
Participation
in Clinical Trials - PDF
Despite the lengthy description required to convey this mission, the eye contact and reactions were very encouraging: “This is good.” “I like that.” "Interesting." Many cards and assurances of follow-up exchanged.
KEY CONTACTS & POTENTIAL ALLIANCES:
=Many foreign contacts: Patient advocacy is unique to the US. Can we link to your site? Can you make a Chinese, Australia, Austria, Netherlands, Korea, Spain, Mexico, UK, Canada. A few visitors who took the time to review the website asked if we could create a version of PAL in their native language.
=Imaging companies: Concern about repeated CT (every 2 months) to monitor time to progression. Obstacle to enrollment. Also a need for alternatives to bone marrow transplants. MRI might be a better way to monitor changes in the marrow, but of course it can’t be used to verify or identify cell type. Concern about repeated exposures necessary to measure TTP
(Time to Progression) is an obstacle to enrollment sometimes. Especially for individuals with indolent lymphoma. …
=Genitope group: Donna Shu, Bonnie, Susan, Scott … a reunion of sorts.
=Met Maureen O. Wilson, Ph.D. National Cancer Institute CER Institute Assistant Director Deputy Ethics Counselor - President’s Counsel. & Karen L. Parker, M.S.W. Special Assistant Assistant Director's Office and President's Cancer Panel Office of the Director, U.S. Department of Health and Human Services
Dr Wilson came directly to our booth. We had a long talk. Mostly, I described our mission, and that we advocate for the NBN and why. Took opportunity to describe ethical concerns with an un-named vaccine protocol. I don’t mind saying, that at this point I’m very comfortable with what we do and why.
=Representative of Matrix Oncology - Doctors helping Doctors. After the Optimizing Consult review said fairly earnestly: Will consider distributing brochures to oncologists. Took package of 500 at end of exhibit.
=Representative of Oncology Associates - Physicians Network Services seemed very interested in PAL's trial participation mission. Promised to review our site and to consider including info about PAL in their newsletter, which is distributed to oncologists nation-wide.
=Peggy Rochon, Program Director, Patient Advocate Foundation. PAF is a highly respected advocacy group with national presence. PAF seemed genuinely interested in our mission. Asked for brochures and will consider distributing packages to lymphoma patients nation wide.
=Alan Kinniburgh, Ph. D, Vice President Research Administration, The Leukemia & Lymphoma Society – Came by and asked about our mission. Seemed genuinely interested; that it’s possible that LLS might help to fund our work.
=Nature & NEJM: Described mission; then asked if I can get an free online subscription. representatives Looks like yes and yes.
=Ann E. Fonfa of The Annie Appleseed Project. She had in hand an official Physician-endorsed dietary guidance book open to full-page commercials on soft drinks and other dubious food choices.
...
A FEW FINDINGS:
GM-CSF can sometimes raise LDH according to Berlex experts.
No surprise, but the main reason for CT over MRI is increased cost and time. But MRI can also show changes in bone marrow, so this added benefit could be exploited as an argument for use of MRI in trials that require repeated imaging over long periods of time.
Had no time to attend the sessions. I’ll be reading the abstracts and trying to make some sense of them with you all, one at a time. I do have an interesting and informative review full-text article on immunotherapies by Timmerman to post once I scan it in.
If you got to this point, I salute you for your stamina.
Good to be home.
~ Karl Schwartz
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