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By Allison Proffitt

November 8, 2017 | HudsonAlpha Institute for Biotechnology announced the continuation and expansion of its Information is Power initiative today. Information is Power offers free genetic cancer risk testing to residents of North Alabama in their late 20s and early 30s. This will be the third year HudsonAlpha and Kailos Genetics have run the initiative and the second year it is being sponsored by Redstone Federal Credit Union (RFCU).

Today through November 7, 2018, free genetic cancer risk testing will be available to women and men 28 to 32 years of age who reside in Madison, Jackson, Limestone, Marshall or Morgan County. The test is also available at a discounted price of $129 for individuals 19 and older living in those counties.

The Kailos Genetics test panel screens for mutations in over 30 genes, including BRCA1 and BRCA2, linked to breast, ovarian, colorectal, and prostate cancers. Any pathogenic findings are returned to the patient and his or her doctor. Benign variants and variants of unknown significance are not returned to the patient.

“For the dozens of people for whom this test has been life-changing, and perhaps life-saving, those who have reached out have thanked HudsonAlpha for offering Information is Power in the community,” said Maureen Mack, Vice President for Marketing and Communications for HudsonAlpha, in an email this morning before the kick-off luncheon in Huntsville. “And even for those who received negative results, the process has begun important conversations among families, among friends, and in our community about family health history and about genetics.”

Two Years In

HudsonAlpha and Kailos originally launched the Information is Power initiative in 2015. “More than 2400 women (and men) have taken the Information is Power test,” Mack wrote. “While the tests have been free for 30 year olds only, we also have offered the test at a reduced rate to other adults in the qualifying counties. Women as young as 19 and as old as 96 have participated.” 

Mack says that so far the program has returned positive results to about 75 people, more than half of whom did not have a strong family history of cancer and would not have been recommended for genetic testing, based on the current standard of care.

Troy Moore, Chief Scientific Officer at Kailos, has seen the test population and general uptake change. The first year, the tested population was mostly female; the free tests were only available to 30-year-old women. “We saw more men [in 2016] than in the year prior, and we hope to see that trend continuing,” Moore said.

The test population has also tending slightly older. “You have the 30-year-olds that were free, but when they had to pay, we saw it trending toward older adults.” This year’s test is available to men and women ages 28-30. Moore hopes that by expanding the free test window, more younger people will consider testing.

The other big change over the first and second years, Moore said, is physician engagement. “We hit a turning point over this last year. We have physicians calling us asking for more flyers to give patients. Certainly several of the OBGYN offices here in town are directing people now to take advantage of the program. That’s very different from the first year, when there seemed to be a lot of hesitation and uncertainty about what this was all about.”

In the second year of the program, even more effort was made to educate physicians, share numbers, and answer questions. “I would like to say it was a massive campaign that we did. We brought them all in and talked to them all. But it was much more diffuse than that. It was reaching out to individual offices, offering to send the genetic counselors out and talk to the staff. All that has really paid off.”

Kailos has three genetic counselors that work on the Information is Power initiative, none full time. They each work with physicians and patients as needed. The work of the genetic counselors has been a major factor in the “newfound acceptance among the physicians” of the program, Moore said. When a patient has a positive finding, the Kailos genetic counselors are available to communicate that finding and its impact to both the patient and the physician.

Community Value

The Information is Power initiative is still a small percentage of Kailos’ business, Moore said. The company does a lot of pharmacogenomics testing and cancer testing across the country. But it is a very important part. “It’s a great example of a true public screening effort and what could come out of that,” Moore said. “Maybe some of the things that we’re always worried about—how patients will react—if done appropriately you can do this kind of effort. Hopefully it’s a model for other groups as well. We think it’s important to continue doing it.”

Moore said that some of the high level findings from the program in terms of uptake, percentages of types of findings, and patient behavior have been presented by Kailos genetic counselors at conferences. Several graduate students are working with the data for publication is well. For instance, one researcher is looking at patient next steps. Another is looking at how the initiative has been received by minorities and what else could be done to expand access in that realm. “I think that’s really important. That’s something where we haven’t been particularly successful up to this point.”

The funding, of course, is often a limited factor in these efforts. A similar breast and ovarian cancer screening project from Toronto was struggling to get off the ground when Information is Power originally launched. Last year, the program launched with help from Veritas Genetics after overcoming significant financial hurdles.

In Alabama, Moore gave much of the credit for the continued success of Information is Power to the Redstone Federal Credit Union.

“In the past this was an internally-funded project,” Moore said. When the program launched in October 2015, HudsonAlpha had been actively fundraising for a year. “I think it says a lot that one of the major employers here in Huntsville, that’s a very active part of the community, saw this as a way of expanding what they’re doing for the community. I think we all realize they could invest that money in a lot of different ways, but they saw this as a very viable path for them to have a major impact.”

Howard Jacob, executive vice president for genomic medicine at HudsonAlpha, agreed. “We are grateful to Redstone Federal Credit Union for their continued support that will allow us not only to offer this program for another year, but to expand the age range to anyone ages 28 to 32 in a five county region of North Alabama,” he said in an email this morning.