The Daily Rise: Thursday, March 17

Colon Cancer Mystery

WTOP’s Paula Wolfson reports on a growing concern: colon cancer patients keep getting younger.

“Colorectal cancer is usually thought of as a disease for older adults, with screening recommended only for people older than 50,” WTOP reports. “But gradually the demographics of the disease have been changing. Colon cancer patients are getting younger, and no one is quite sure why.”

According to the Colon Cancer Alliance, 11 percent of colon cancer diagnoses and 18 percent of rectal cancer diagnoses occur in those who are younger than 50. WTOP points to a recent study published in the journal Cancer, which found that many adults younger than 50 with colorectal cancer are diagnosed at an advanced stage. One such patient shared her story.

“Everything was kind of a blur then,” Austin Thomas, a 28-year-old dietitian, athlete and colon cancer survivor told WTOP. “I am the first person on either side of my family to have any type of cancer. How did this happen to me?”

She added, a common repeated phrase, “Cancer doesn’t discriminate.”

On the Same Page: Drug Importation

Drug importation. We’ve all heard the phrase, but do we all agree what it actually means?

Douglas Holtz-Eakin, president of the American Action Forum, discusses the challenges of competing definitions for drug importation and what it means for patients in a recent piece published at the Huffington Post.

“It is not always clear what people mean by “import prescription drugs” or, as it sometimes is said, “reimport prescription drugs,” he writes.

Holtz-Eakin lays out three possible definitions. The first is probably what most of us think of: “to manufacture prescription drugs in an FDA-approved facility overseas, transport them to the U.S. in an FDA-approved supply chain and market them in the U.S. on terms comparable to domestically manufactured drugs.”

That’s legal now. What are the other definitions?

Check out the rest of the piece, “Three Easy Lessons on Ruining Innovation and Drug Markets.”

Why Academia Alone Can’t Help Patients

Thomas Peter Stossel of the American Enterprise Institute explains in the Tampa Tribune why the “Federal Government Cannot Replicate Private Drug Development.” The piece is revealing because it draws from Stossel’s 40 years of experience working with public funding provided by the National Institutes for Health, which he says doesn’t go towards new medicines.

“How do I know? I’ve enjoyed continuous NIH research funding for over 40 years, and no one is living one second longer or better for it,” he explains.

Again, his point isn’t to attack the NIH or public research. He was a part of the public research system. He’s explaining why patients can’t rely on public research for the development of new treatments.

The problem is academia has different values than the private sector. Academia values “discoveries,” which can be turned into academic papers. Since journals don’t like marginal improvements, academics don’t focus on the incremental gains, which yield slow and steady progress for patients. That’s where for-profit companies come in: to deliver incremental but meaningful research.

“One reason is that academic culture values intellectually titillating discoveries and experimental virtuosity, not the seemingly menial trial and error efforts that are necessary for practical advances,” he writes. “I know that too, because I’ve been trying to develop drugs. This cultural divide between academe and industry is a prominent reason nearly 90 percent of recently approved medications received no public funding during development.

We have two take-away points from this piece:

  1. We can’t cripple private sector innovation in the development of treatments. The public sector – under the current academic framework – doesn’t serve patients’ interests.
  2. Academics need to change their mindset. Being published in the latest journal shouldn’t drive research funding. The focus should be on innovation that helps patients.

Drug Safety

In last week’s “Get to Know Your Jargon” entry, we explained “Risk Evaluation and Mitigation Strategies” and “Elements to Assure Safe Use.” Pop Quiz! Now, we’re going to test what you learned.

Today, we share Stacey L. Worthy’s insightful op-ed published at The Hill, which seconds our concerns about changes to these important safeguards.

“Congress gave FDA the authority to require REMS so important medicines that carry high risks are prescribed and dispensed appropriately by physicians, pharmacists, and other health professionals and taken correctly by patients,” writes Worthy, who serves as director of Public Policy at the Aimed Alliance. “This requirement is especially critical for drugs known to carry the greatest risks where restricted distribution systems ensure these medicines are not taken by the wrong person or not taken exactly as directed.”

Patients are speaking up. Worthy’s piece follows a strong statement in defense of the current safeguards, which was released last week by the Patients Alliance for Drug Safety Protections, a coalition of 19 public health, patient advocacy, health professional and disease organizations — including Patients Rising.

You’ll receive updates about new resources, patient stories and insights, advocacy work, and alerts about patient-support events.

The latest about patient advocacy

Join our Email List

Get notified about new stories and resources to empower patients and caregivers.