COVER
Grassroots
Prostate Cancer Action Network (PCAN), New Coalition
November 20. When Fred Mills traveled to the Prostate Cancer Awareness Symposium in Phoenix, Arizona last week, he knew he was about to do something he's done before -- help start an action group. The outcome is PCAN, the Prostate Cancer Action Network.
Arizona is one of the 6 states targeted for the latest round of Medicare's new policy for Lupron, called Least Costly Alternative (LCA). This forces patients on that hormonal therapy to switch to Zoladex or pay $125 out of pocket per monthly shot.
On November 3, Mills talked with Dr. Gerald Rogan, who is Northern California Medicare Safeguard Administrator and Medical Director of National Heritage Insurance Company (NHIC). Rogan confirmed that NHIC plans to implement LCA.
Mills realized that as well as involving Oregon, Arizona, Nevada, Alaska, and Hawaii, this LCA policy on Lupron is "an all-California issue, not just the southern part of the state." So Medicare can't hide the issue by splitting it up piecemeal. All-California issues are more than little local difficulties.
Mills talked to two other leaders in the prostate cancer movement, Ralph Valle, a list owner of the Prostate Pointers Mailing List and Harry Pinchot. All three agreed that that action is required. Pinchot had hammered away at the LCA all the previous week. Valle says they are now working together on the letter campaign aimed at Medicare and elected representatives.
"Many prostate cancer patients feel that Medicare picked on them to test LCA," Mills says. "I believe they picked on us because on the whole we've not been organized, assertive, and persistent on the issues that affect our treatment."
The meeting to organize PCAN was chaired by Mills, Pinchot and Valle. Represented were the Education Center for Prostate Cancer Patients (ECPCP), Prostate Cancer Research and Education Foundation (PC-REF), Prostate Cancer Communication Resource, and US-TOO! Three physicians attended as observers: Israel Barken, MD, Charles Myers, MD, and Stephen Strum, MD.
"A coalition of patient activists is what we need," Mills said yesterday. "We're not creating another NPCC, US-TOO! ECPCP, or PAACT. We are a bunch of folks representing these groups, groups that agree on long-term cooperation to act on issues affecting patients and their families."
Prostate Cancer Action Nework will address more than Least Costly Alternative. "I hope at last we have found a mechanism that'll help in getting patients active," Mills says. "I think we should target every group in the nation as the spark plugs that will run the engine of change."
A couple of days after the Phoenix meeting, Mills nominated Ralph Valle to lead PCAN. This was agreed by e-mail consensus. PCAN will have a forum allied with the e-mail action group PCPal. Valle is working out the details with Gary Huckabay, PC-Pal list owner.
Valle told us, "This is going to be a national organization.... The group we started is for the Southwest region because of the impending ruling on LCA for the western states. This is the group I will lead. PCAN will be primarily geared to action in prostate cancer advocacy. LCA is just one action, but there are many pending. PCPAL will be our means of communication and signaling for public action."
Mills prefers to focus for now on nurturing cooperation on this LCA issue in the Western region, then offering it as a model for others to transplant. But like his partners in this he has a vision. "Active networking is the key," Mills said. "Our desire to end the suffering for ourselves, our families and others, will be the fuel. The end of the war will come when we decide, individually, to win it. As Lloyd Ney said, 'Let's conquer cancer in our lifetime!'" J. Strax
Why I Oppose LCA
by
Fred MillsThe issue for me is the forcing. It's all about patient choice. Saving money is fine, but let's not do it at the expense of telling patients what treatments they must choose.
It's so frustrating - it seems as if the government is at war with us prostate cancer patients. If Medicare gets away with this without viable challenge it will become a precedent for other types of treatments, further eroding patients' rights to stay on medications they are comfortable with and are taking on their doctors' advice.
If they get away with this with prostate cancer patients, who says they can't extend the precedent to breast cancer, AIDS, lung cancer?
As a patient on a second cycle of CHB (Lupron, Eulexin) I don't relish having Medicare tell me or other patients that regardless of how comfortable or confident we are about being on Lupron, we must switch drugs.
Most patients and their families could tell Medicare and their insurers how difficult it is for a cancer patient just to get to a point of deciding to be on any type of treatment, let alone having outsiders destabilize everything by announcing that the medication they have chosen will no longer be covered.
To me, LCA is devoid of compassion and understanding of the plight of patients and their loved ones. And it causes harm.
The difference in the way Zoladex is delivered worries and causes stress for some prostate cancer patients. That, on its face, is a reason for NOT making patients change.
The Medicare issue is part and parcel of the managed care issue. The only way we'll change it or anything else about this disease is if earnest people get involved with these issues.
Many of us feel cheated out of our retirement years by this thing called prostate cancer. We'd much rather do other things, who wouldn't? I was diagnosed at age 50. Retirement? What's that!? Many of us were caught by this disease right at the beginning or in the middle of our retirement years, just when we thought we had the world by the ass. Such irony, eh?
If all of us would commit to giving activism our all for a year or even six months, think how much we could accomplish. Instead, I see the same faces in the trenches, year in and year out, trying to do too much with too little support and help.
No, I don't mean family support, I mean help in standing up in our vast numbers together to help each other. Organizing marches, writing legislators, supporting prostate support groups who are involved with the issues -- and being a real pain in the keester when we see inequities in our health care system.
We need action groups around the country to network and stand up and be counted. Those of us who are involved every day, year in and year out, can't be as effective as we would be if the vast majority played some part, along with us. We can't keep doing it alone.
There's nothing wrong with wanting to spend our time with friends and loved ones, and we do. But I ask those who do nothing, or who get impatient, to ask yourselves what you've done lately to help.
If you don't have a group start one. If you do, at your next group meeting why not decide how you can be a part of the effort to deal with LCA and other issues. Meet, talk, write letters, march, stand up on the issues that affect us and our families.
Don't expect others to do the job for us. If you're serious about wanting change, start asking, "How can I help?" Become an activist at your own pace. No one has to give up their personal and family lives, just pick something, do it well, and try to stay with it. Guess I really got off on a bit of a tangent, but there it is. Let's hear it for patient rights, my friends!
Medicare's LCA Research Window Dressing
People to Contact about Least Costly Alternative
For help contacting your Senator or House representative about an issue, try these sites:
http://www.house.gov/
http://www.senate.gov/
Common Cause Contact Congress
For more about changes in Medicare, see Medicare + Choice, by Ann Miller, AARP
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