I'm Jane, and I'm a breast cancer survivor

I'm Jane, and I'm a breast cancer survivor

There was much celebration on Capitol Hill today with the announcement of the new House health care bill.  For myself, as a three time breast cancer survivor, there was tremendous sadness and disappointment in the Speaker.

Nancy Pelosi made a choice with regard to the lifesaving biologic drugs I took when I was in chemotherapy that will cost many of my fellow breast cancer survivors everything they own, and quite possibly their lives.

Jeanne Sather is another breast cancer survivor. In 2007, she wrote on her blog The Assertive Patient:

I love Herceptin, a drug I have been getting to treat my metastatic breast cancer for more than five years now….The main reason I love Herceptin is that it is a targeted antibody, without the side effects of traditional cancer drugs: hair loss, fatigue, nausea, vomiting—you know the list.

The cost of Jeanne’s miracle “biologic” cancer drugs, Herceptin and Avastin, was $300,000 a year in 2006.  By the time she switched to another biologic drug, Tykerb, she was within a few months of hitting her lifetime cap of $1 million:

Even with the help of a special state health insurance plan, the 53-year-old freelance writer is struggling to afford the expensive new drugs that are helping her in her battle.

“I’ve been borrowing against my house to make ends meet, and that can’t go on,” Sather says. “I’m so afraid these drugs will cost me my home.”

Jeanne fought.  She and others went to the state capital and lobbied to have the cap raised.  “Now I am safe for another few years,” she said.

But she is not alone.  Biologic drugs also treat rheumatoid arthritis:

Access was the issue for Theresa Manville, 61, of Bay Village, Ohio, who simply could not afford the rheumatoid arthritis drugs she needed. She was laid off from her job as a senior account manager at a public relations firm in 1992, and though she started her own company, she could not get private insurance because her arthritis was considered a preexisting condition.

“Today,” Manville says, “I’m on Medicare disability because I didn’t have these drugs and my RA progressed. My joints deteriorated. My hands are deformed. I used to be a runner, a softball player and scuba diver. Now I need special orthotics in my shoes just to walk. And I’m going to need replacement surgery in my right knee.

“Think of the pressure on the health care system, just from me,” Manville says. “If I’d had the drugs 10 years ago, I could be independent today. I might not even be on disability.”

Medical student Laura Musselwhite tells the story of a patient who was hospitalized with Crohn’s disease:

This patient required hospitalization for a flare that she attributed to not being able to afford the month’s Humira, a biologic medicine used to treat severe, active Crohn’s disease.

The drug is priced by Abbott Laboratories at a staggering $22,000 a year. This patient would clearly have benefited from the availability of an affordable, generic version.

But thanks to Representatives Anna Eshoo and Joe Barton, there will be no generic versions of these drugs.  At least not for 12 years, if the House health care bill announced today passes.  And because of an “evergreening” clause that grants drug companies a continued monopoly if they make slight changes to the drug (like creating a once-a-day dose where the original product was three times per day), they will never become generics. Instead of the Waxman-Deal amendment that granted much more reasonable terms to biologic patent holders, Speaker Pelosi chose the Eshoo-Barton amendment.  And we could all be paying for that choice for the rest of our lives.

Breast cancer boards are filled with women who have been turned down by their insurance companies for Herceptin because they only cover generic drugs, or because they only pay a portion of the $48,000 a year (or more) that the drug costs.

Cheryl, a Stage IV breast cancer survivor, writes:

As my socialized plan has decided to stop paying for my herceptin, I’m now looking at paying “out of pocket”.  My insurance won’t cover herceptin.  Let’s see, $142K a year.  I don’t think my house is worth that much.  I was curious about this thread because I suspected herceptin cost about that much but wasn’t sure.

I’m trying not to freak out about this too much.  My children need a home and that appears to be my next option.

I think it’s time for me to start sitting on the corner with a tin cup.

Another survivor writes:

Well, I just got my insurance explanation of benefits, and they are treating it as a pharm…which means I have to pay $553.  I can’t afford this drug. I’ll try appealing to the ins. co (which means calling between working hours, and I can’t afford any more time off to deal with this.)

I’m not  happy.

A man named Karl writes:

My mom is 2+ in ICH and now 3.89 ratio in FISH. The onc said she’ll have 6-8 sessions of chemo and she could take the herceptin while doing chemo or after chemo. Not sure what does 3.89 means or how does it affect the cancer. Another thing that we’re worried of is the price of Herceptin. The price is too high and we’re not sure if we can afford it :(

This is deeply, deeply wrong.  It’s immoral for Congress to give endless monopolies to pharmaceutical companies on these cutting edge drugs in this bill.  If an AIDS vaccine is found, it too will be a biologic.

These drug manufacturers argue that the cost of developing biologics is so expensive that they need the extra patent time to recoup their investment, or they won’t have any incentive to develop them.  Hogwash.  A study done by Drs. Joe DiMasi and Hank Grabowski, who are funded by PhRMA, concluded that the cost for developing biologics is $1.3 billion, as opposed to $1.2 billion for conventional drugs.

And as for incentive for development?  As bleicher of Blue Mass Group notes, granting endless monopolies for slight changes encourages companies NOT to innovate:

[T]]hey will have far less reason or incentive to invest in patentable new cures, and will have every reason to invest in low risk, incremental development of existing products to reap (without taking risk) the same profitable rewards.  In the short term, some of our local companies may like this protection of their products, but over the long term, as we fail to incent investment in new discovery research, our biotechnology edge will decline and the rest of the world will pass us by as they invent the next generation of products.

There is nothing good about this legislation, unless you’re Roche, Eli Lilly, Schering-Plough or any of the other giant pharmaceutical companies reaping huge profits off these blockbuster drugs of the future.  About a quarter of new drugs, and half of important new drugs are biologics.  This is nothing short of an attempt to sew up the future at the expense of you and your children.

So POP is joining to together with students like Laura Musselwhite and others in the AMSA for a Halloween “treat, not trick” demonstration this Friday at four locations around the country.  I’ll be there with medical students  in Washington DC at the Russell Senate office building as they arrive fully costumed in their white coats and give out “treats,” urging Senators not to “trick” the nation’s patients with a bad ‘biologic’ medicines proposal.

Please join us:

DATE: FRIDAY, OCT. 30

Washington, DC: Russell Senate Office Bldg, Constitution & Delaware at 3:00 pm

Baltimore, MD:    Barbara Mikulski’s office, 1629 Thames St.  at 2:30 pm

Raleigh, NC: Senator Kay Hagan’s office, 310 New Bern Ave @ 1:30 pm

Palo Alto, CA: Anna Eshoo’s office, 698 Emerson St, Palo Alto at 2:00 pm

These students are fighting for us, fighting for our future.  Please join me in supporting them, and their commitment to being healers who want to give their patients the very best care that they can. They don’t want their hands tied by this bill.   I have been helping them organize and they are just so wonderful.

Even if you’re not in close to one of the events, you can help out by joining the POP Facebook Group, Tweeting about the events and donating to POP. 

And please call your member of Congress and tell them that this is a terrible bill that will sentence breast cancer survivors and others to financial ruin and death.  For the sake of everyone in need of health care in the future, please tell  them to vote “no” on this cruel piece of legislation crafted to maximize drug company profits at the cost of human lives.