While we keep all information about individual clients completely confidential, decision.org has also been involved in policy matters that benefit patients in the more general sense. Here are some of our recent initiatives in the policy area that we hope will improve the landscape for patient access and good clinical results.


Many forms of chemotherapy are biologic treatments with breathtaking price tags. Even for those with insurance, the co-pays and deductibles can crush all but the wealthiest patients. One major reason for high prices is the lack of generic competition.

Decision.org has worked to promote faster availability of new versions of these treatments. They are typically called biosimilars rather than generic copies, because biologic products are nearly impossible to duplicate identically the way small molecule chemicals can be copied. The products are similar enough, though, to substitute for one another in the course of patient treatment.

Our advocacy is not only to hasten the more affordable versions. We’re also concerned about excessive clinical testing requirements that could put patients at needless risk in clinical trials. These risks exist both in the FDA, whose guidance on biosimilars is still pending, and internationally where harmonization of these rules is an important goal.

We’re looking for treatments to come faster, cheaper, and perhaps even better than what’s now available for treating life-threatening disease.

Breathtaking drugs, breathtaking prices: the Provenge Story.

Our interest in connecting patients with the therapies they need also requires an eye toward encouraging prices patients can afford. It seems with each newly-available cancer drug blockbuster comes an ever-increasing blockbuster price tag. At some point, the country has to have a Conversation (with a capital ‘C’) about when the price of therapy has reached its natural limit.

One recent case we followed made some people think this national Conversation was starting.

When the blockbuster prostate vaccine Provenge hit the market, analysts were stunned to find a $93,000 price tag on the three-month therapy. The product extends life by an average of 3-4 months, which by a very unsophisticated calculus suggests about $30,000 per month of life saved. ACPD has been active in exploring ways for Medicare to cover Provenge at fair pricing – it’s mostly a Medicare battle because most cases are prostate cancer are in elderly men where Medicare pays the bill.

The story is ongoing, especially as Dendreon expands Provenge supply to meet the expected demand. It appears the Conversation doesn’t begin with $93,000, but other products in the pipeline may be $193,000 or even $1,093,000. Our work at decision.org is cut out for us.

Will patients get medical supplies under competitive bidding?

In yet another Medicare thriller, the government is trying to trim the high cost of medical devices and supplies by starting a bidding war among the suppliers. Prices of everything from diabetes supplies to wheelchairs dropped by 25-30% in the first round of competitive bidding, which was no surprise to those expert in equipment pricing. This first round included only a handful of markets as a test run for broader rollout in the future.

We’re all for saving money when Medicare is overpaying for these supplies, and study after study has shown that is the case. However, cutting up the market into specific markets with near-monopoly status also means that the winning suppliers might not serve patients’ needs. Will they have the brand that’s needed? Can they deliver oxygen tanks in the middle of the night? Decision.org is looking at how to make sure patient rights aren’t thrown out with the bathwater.