The power of patient groups

*Andrew Tolve reports on how patient groups can help pharma deliver new and better treatments*

Andrew Tolve reports on how patient groups can help pharma deliver new and better treatments

When it came time to make his final decision, Jan Geissler grabbed a pen and a piece of paper.

A self-described technology geek, Geissler had spent his college years immersed in business administration and decision analysis.

Now, he would apply the lessons he learned to his own life.

On the paper, he plotted a decision tree with the two options before him: a bone marrow transplant or an experimental targeted therapy.

The bone marrow transplant was the sole recommendation of his local doctor, who a few months earlier had shocked the otherwise healthy 28-year-old German with the news that he had chronic myeloid leukemia (CML).

Incredulous that a transplant was his only option, Geissler went online and did extensive research.

In 2001, online CML patient groups were practically non-existent in Germany, but Geissler managed to track down a woman in Singapore who kept an updated Yahoo online group about the latest CML trials.

One phase I/II trial was being conducted 400 kilometers away from Geissler in Germany.

He contacted the doctor and discovered that he qualified.

And so, Geissler had a decision to make.

On one side of his decision tree, he discovered that the bone marrow transplant stemmed into a 23 percent chance of mortality; on the other, the experimental targeted therapy with a transplant as back up presented a mortality rate of just 9 percent, based on findings of early trials.

After my diagnosis, I fell into a big hole where I was questioning everything in my life because I felt like I might die pretty quickly, Geissler says.

The only thing that made sense was to make myself as informed as possible and then go about my decision in the most rational way.

The power of patient information

Geissler enrolled in the experimental trial and soon found himself in remission.

He took his successful treatment as a mandate to help spread information about all available options to other CML patients in Germany.

In 2002, he started the website Leukmie-Online, which translated medical publications for a German audience and hosted a forum for leukemia patients.

The site quickly grew into one of the most popular patient sites on leukemias in Germany.

In 2003, Geissler was a founding member of the European Cancer Patient Coalition (ECPC), which aims to unite all cancer patient groups and make their voices influential in the European healthcare debate.

In 2007, he co-founded the CML Advocates Network with three other patient advocates to unite CML patient groups across Europe.

Today, the network includes 53 CML patient groups in 43 countries.

And in 2008, Geissler became the ECPCs first director, a role he held until October 2010.

In just a few years, Geissler evolved from a patient yearning for information into an influential enabler of that information throughout Europe.

Of course, we accept that industry is interested in profit, clinicians are interested in good research, and authorities are interested in controlling costs and having the most efficient care for as little money as possible. We all understand that, Geissler says.

But the first and foremost priority needs to be creating better solutions for patients more quickly.

New and better treatments

Patients play a key role in delivering new and better treatments, Geissler argues.

Leukemia has come a long way in the past 10 years, in large part due to patients like Geissler who were willing to enroll in experimental trials.

The specific experimental trial in which Geissler participated was for the drug that became Gleevec, Novartiss magic bullet that is now widely credited with converting a fatal cancer into a manageable chronic condition.

Researchers are still searching for more effective targeted therapies for other cancers.

To deliver these, they need clinical trials, many of which today languish without enough patients.

Patients are crucial so industry can achieve better success in clinical trials, says Geissler.

A lot of money is being wasted on trials that dont recruit, and many trials dont work, never deliver results, or have been designed in a way that patients dont want to join.

Geissler says that pharma can foster patient groups and harness their networks to discuss priorities in research and trial design to make sure trials are in patients' best interest.

There is a lot of misconception out there about clinical research, Geissler says.

People often feel like theyre guinea pigs, mainly due to press reports about research. Theres a joint interest, therefore, for doctors, industry, and patients to create better public perception.

Transparency first

Geissler offers some advice for pharma companies to effectively embrace the patient opportunity.

First, be transparent.

When it comes to clinical trials, let your intentions be known.

If youre honest with patients, theyll be honest with you, which will lead to more expeditious results.

Second, build and provide resources for patient groups. Geissler specifically endorses patient relations departments.

Pharma companies often leave the responsibility for patient groups in a hazy place somewhere in the middle of marketing, government affairs, and public policy.

Doling out responsibility to a specific department, and a newly created department like patient relations, helps clarify a point of access for patients.

Patient relations departments have been the gateway for patients to voice joint interests and differing interests, says Geissler.

We need to build a long-term relationship in which patients have the same people to work with.

Third, dont let the legal department overpower common sense.

Pharma companies are obviously concerned about complying with regulations, but legal departments can be oversensitive to the point of obstructing progress thats perfectly legal.

Its important to keep the lawyers at bay, says Geissler.

Finally, support patient groups through unrestricted grants and multi-sponsor training events.

The days of single-sponsored patient activities may be gone, but pharma companies can still co-sponsor educational events where patients learn about best practice and meet other prominent voices in their disease group.

Indeed, the global CML Advocates Network grew out of a patient advocate meeting in Switzerland that Novartis hosted in 2003.

Generally, individual patients will start to inform themselves, but they sometimes need support, not necessarily financial but encouragement to say, Have you ever thought about building a patient group? Have you ever thought about getting in touch with others to consider how you could help improve medical solutions for your disease? says Geissler.

This is where industry can help.

For more information, see the CML Advocates Network website or contact Jan Geissler at

For more on how industry can help patient groups, see The patients view: How patients can add value toand influencepharma.

For more on patient groups and compliance, see How patient advocacy groups can boost patient compliance.

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