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Alert Number 77

The Difference Is Friendliness

Date: February 16, 2005

There was this ad a couple of years ago that I really liked. It showed a gorgeous golden retriever, tongue lolling out in the characteristic happy smile of the breed and next to it, a snarling doberman pinscher. The caption read "The difference is friendliness". I can't remember the particular product they were selling, but the ad stuck in my mind perhaps because our dog Topaz looked a lot like the golden in the ad.

Every week I get many requests from our members looking for referrals to local oncologists. CLL experts and consortium researchers are important, but we all know that when it is time to tango, most of us will be depending a lot more on local healthcare providers. Correctly so, in my opinion. The famous and dedicated researchers are also likely to have other agendas (clinical trial recruitment, for example) besides treating the patient with the least damaging and most effective therapy.

We propose to pull together a directory of oncologists and hematologists who practice at the community level and who are willing to work with their patients as legitimate participants in their own healthcare. We need to identify doctors who fulfill most if not all of the following wish list. I am sure you can think up some more criteria that are important to you. Send us your recommendations if your doctor:

1. Is knowledgeable and experienced in treating CLL patients (in other words, you are not his first and only CLL patient thus far);
2. Has good listening skills. You would be surprised how rare this quality has become in our healthcare system;
3. Is willing to consider the patient as a legitimate participant in the process with none of this "my way or the highway" routine practiced by some doctors;
4. Is willing to accept reimbursement from several insurance carriers, including Medicare;
5. Is willing and able to learn and keep up with new concepts and without a tendency to slam-dunk dismissal of 'new fangled' therapies or testing;
6. Is accepting new patients.

Here is what we want to do. We will put together a roster of local oncologists and hematologists that are recommended by their own patients. The CLL Research Consortium experts are already well documented in other lists and will not be included in this list. If you think your local oncologist fits the bill, please send us the following information about him/her:

1. Name of doctor;
2. Office address (full address, including zip code);
3. Phone number (doctor's direct line, as well as that for the appointments secretary, if you have both numbers);
4. Doctor's email address, if you have it;
5. A sentence or two as to why you particularly recommend this doctor;
6. Your wishes on whether or not you want your name published along with the referral on our website. If you wish, you can go the whole nine yards and give us your contact information as well so that future patients can contact you if they so wish. If, on the other hand, you wish to remain anonymous, we will most certainly respect your wishes. We might contact you personally if we have any questions or if you have not given us all the contact information;
7. We welcome referrals in other countries as well. CLL Topics does address the world-wide patient community.

It may take a while to get a good collection of names but that is okay. We will eventually get there. As soon as we have even a good handful of referrals, we will have a new page on the Topics website where we will list the doctors' names, organized by geographic location and keep adding to the list as we get additional recommendations. Down the road we hope new patients would be able to just click on their state and come up with a handful of patient-recommended doctors.

The success of this project depends on you making the effort to send in your recommendations. It is only right that the patient community rewards good doctors with recommendations that will help grow their practice. The Internet gives us tremendous reach and clout but only if we are willing to get off our backsides and use the new found strength in numbers.

Be well.

Chaya
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Editor's Note: This database was never completed. Our thanks are due to several helpful readers sent in their recommendations and observations. However, we quickly realized that 1) geographic coverage would be very spotty; 2) the guidance was necessarily subjective and sometimes contradictory; 3) in-network status of the specialists for various insurance plans was not readily available and 4) publishing a "recommended list" carried an implication of an endorsement which we could not provide. This initiative falls into the category of good idea that somehow did not work out.
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