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Hi wonderful new group of friends,
I received some emails on how my trip went so I wanted to give a run down on my lobbying efforts.
First, the day was appropriately labeled Cancer Care Awareness Day. The reason behind my efforts and many others from around the country was to lobby to hold a change in the way Medicare and Medicaid benefits will be paid for cancer treatments starting 1/1/2005 until more research into the payments system is done and new treatment codes are added into law.
Basically, the way the Oncology offices cover the unreimbursed cancer costs (counselors, social workers, nutritionists, port flushing (not coded!), massage therapy, pharmacist who mixes the drugs, chemotherapy drug waste, high nursing salaries RN-ONC nurses who on average make approx. 60k to 90k around the country) is to add on to the price of the drugs. That is why when you see the drug costs you wonder how on earth they can cost so much? Some of that cost is an additional cost added on by the oncology office to cover what they legally can not code/charge for because there is no "code" for some of those services. Currently the clinics are only allowed to charge for the amount of drugs that the patient actually received. So when you have low blood counts and the Dr's office gives you a lower dose - the amount that they didn't use is wasted and they must eat the waste. Legally they may not save that waste for another patient. Some drugs have a very short shelf life anyway. The oncology alliance wants to add codes to cover those costs and change the way the drugs are charged. They all agree that the drugs should be the actual cost. Herein lies the problem. The government in their great wisdom has decided to change the cost of the drugs to something called ASP (average sales price). ASP is the average price charged by pharmacutical intermediaries..not the actual drug company. It goes by supply and demand. Supply up, prices drop, supply down, prices up. But the government has also decided to not add any new codes. So you have clinics that will no longer be able to support non-paying medicare/medicaid patients because their treatment will cost the office more than they can get reimbursed for. We know that many medicare/medicaid patients can not afford co-pays or any such payments. Four drug ASP prices have been released and one of those drugs is Taxoltere. It was a general consensus that Taxoltere will be more difficult to administer to medicare/medicaid patients since that price is down to 65% of what it was. Some offices (especially smaller ones) will have a hard time eating a 35% loss. It is a big problem because the less fortunate will suffer the most. I have a hard time wondering how my life is any more important than someone who is poor? Everyone should have access to the same level of care. Canada you have it right or at least a heck of a lot better than our countries unfortunate!
Statistics have shown that cancer care has improved dramatically in the last 10 years since offices are adding all of these additional services. People are living longer and handling treatment better. Now this may make offices lose their nutritionists, social workers and send the poor to local hospitals that are ill equiped to handle them.
Now, whew that is the background.
My experience was overwhelming. We stayed in a hotel in the heart of DC. The night before the actual lobbying we had a dinner and were given a plan of action for the next day. We started up at 6:00am with a pep rally breakfast and congresswoman Johnson from Connecticut came to speak. She is very important to this important legislation. I caught her at the escalator and made sure that she remembered my face next time she votes on cancer issues. She was amazed at how young I am. Cancer doesn't descriminate.
We hit the hill and met with different congressmen and women. Ran all over the place. CSPAN was filming during a session when Lois Capp, Cal. (daughter died of lung cancer), Harold Ford, Jr., Tenn., and Nancy Pelosi, Cal. spoke. Everyone was gracious. My husband and I realized how young all of the aides to the senators and congressmen were so we tried ways to get to them so they would let us see the big wheels. It was exhausting and wonderful.
Hopefully some good will come out of it. There were not very many patients lobbying. Mostly Oncologists, nurses and adminitrators. I enjoyed talking to Oncologists from around the country. One (from Penn.) told Paul and I that he knew he would get paid no matter what happens but he couldn't stand for the thought that so many poor people would slip through the cracks and he would not be able to help them. My Oncology office showed paperwork that if the law is not put on hold they will lose 1.3 million next year. If private insurers follow suit (which they expect to do approx. 6-9 months following medicare) they will lose 2.3 million. They will be forced to close their little satelite offices in rural towns because over 60% of the patients are on medicare/medicaid. Some patients will then have to drive up to 100 miles for treatment since no local hospital has an oncology department. It breaks my heart to think of how many people will just then not get treatment.
How will this effect you? Well, I think that most of you can figure out easily that private insurers will eventually follow suit. You may lose some of the wonderful things that your offices have added in recent years. Your co-pays and out of pocket may go up. Your insurance premiums can go up. I understand the reasoning behind getting medical costs under control...but this is CANCER. If they are going to cut something they should be picking on something else!
What you can do is go on the web, find your local congressman/woman and send an email stating to hold the 2005 cancer reimbursement payment changes. They need more time to figure out what to do and lobby for new codes.
Have a great day, Ruth
PS sorry it was soooooo long!
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