The Daily Rise: Monday, April 25

Distance: Barrier to Access

Last week, we shared news of a recent study that showed patients with rectal cancer routinely receive substandard care. The American Cancer Society probed deeper into the study’s findings, showing that the distance patients must travel to receive treatment has a substantial impact on access to the right treatment.

Patients with stage II or stage III rectal cancer were less likely to receive radiation treatment if they needed to travel at least 50 miles, according to research published in March in the International Journal of Radiation Oncology.

“For patients who need to travel more than 50 miles, a transportation assistance program or lodging services may help to decrease travel barriers,” said lead author Chun Chieh “Anna” Lin, PhD, MBA, director of Health Services Research at the American Cancer Society.

Barriers to access come in many different forms. While cost may dominate the headlines, there are many other factors, such as availability of transportation, that affect patients’ ability to receive the right treatment.

A Sign of How Far We’ve Come

Medical innovation has advanced so far that some patients have a new problem: they’re living long enough to encounter age-related diseases.

Clinicians at Georgetown University reported earlier this month the first case of an HIV patient being diagnosed with Alzheimer’s disease. The 71-year-old patient has lived with HIV for 14 years. Innovation in HIV research has been incredible. From 1996 to 2011, the average life expectancy for an HIV-positive patient has increased by 34 years.

“HIV used to be a fatal disease, but it’s now a chronic disorder,” Scott Turner, a neurologist at Georgetown University and lead author of the paper, told Quartz.com.

Innovation delivers exponential progress for patients. We can’t help but think of this story in the context of the ongoing debate about value frameworks. A value framework in 1996 wouldn’t come close to capturing the value created by the incremental improvements in HIV treatments that, over time, achieved remarkable progress.

Value frameworks can only act as a snapshot in time. They can’t begin to quantify the intangible benefits of innovation.

Number 95: Orange County

Our friend Don Wright is drawing near to accomplishing his goal of running in at least 100 marathons. His personal feat is even more remarkable when you consider that the 75 year-old has run all 94 marathons to-date with cancer, while undergoing treatment.

Diagnosed with multiple myeloma, a cancer of cells in the bone marrow, Don had been taking a pill powerful enough to keep him in remission for seven years. Recently, there were signs that the cancer was returning, so his doctors have been trying new treatment regimens to see which is most effective for him.

It isn’t easy. In the last 8 weeks, Don had to overcome some medical setbacks, including severe back pain. He missed one marathon in February, but has rallied to get back on schedule.

“We wake up every single day with our hearts filled with gratitude for all of the marvelous treatments helping Don stay ahead of this disease,” says Ardis Wright, Don’s loving wife for the last 52 years. “Medical innovation has given us back our life. My husband has continued to live a normal life, he has lived to meet his grandchildren. None of this would have been possible if not for medical breakthroughs, and the people who make them happen.”

Don will be in Newport Beach, CA, for the OC 2016 Marathon, on May 1st – his 95th marathon. Join us in cheering him on with a supportive Tweet @eRaceCancer.

What We Are Reading

If you start screaming at your television screen every time celebrities start dispensing medical advice, you’ll need to check out the latest piece on Canadian lawyer Tim Caulfield. He’s written the book on debunking bad medical advice titled, “Is Gwyneth Paltrow Wrong About Everything?”

After tracking down Caulfield, Stat News asked the author to share the worst “most bunkified” product hawked by Gwyneth Paltrow.

Colon cleanse: There is no evidence we need to cleanse our colons or detoxify our bodies. Vagina steaming to detoxify and increase fertility: again, absolutely ridiculous. Getting stung by bees is her latest thing for anti-aging — because, yes, anaphylaxis is so revitalizing. Goop, her website, suggested wearing a bra can cause cancer. This is raising fears, completely science free. I could go on and on and on.

It’s a valuable reminder that patients should seek medical advice from trained professionals with scientifically-based evidence. More often than not, these fads will cost you money – but they can also jeopardize your health.

On those colon cleanses, he reminds the public, “They add to the idea that we need to adopt extreme strategies to have a healthy lifestyle. Most people do it to lose weight, but it’s a horrible weight loss strategy and it’s destined to fail — as it did when I tried it.”

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.