2018 in review: a year in patient advocacy

Jan 30, 2019
2018 in review: a year in patient advocacy

Raising awareness and helping to change the law, ensuring people can access the support they need and sharing resources and expertise – 2018 was an amazing year for our community of patient advocacy groups.

Here we take a look back at some of the highlights of 2018. As you can see – it was a busy time!

The RAISE Family Caregivers Act brings hope to millions of Americans

The new year gave new hope to the 90 million people in the U.S. who care for a sick family member.1

The RAISE (Recognize, Assist, Include, Support and Engage) Family Caregivers Act passed through Congress unanimously in January. It put the Department of Health and Human Services under starter’s orders to develop and maintain an integrated national strategy to support family caregivers.

How prostate cancer education benefits the whole community – an interview with Ana Fadich of Men’s Health Network

In February, we spoke to Ana Fadich, Vice President at Men’s Health Network, about the group’s ongoing Dialogue on Men’s Health speaking tour.

She told us how hundreds of men had attended educational talks as part of the program of prostate cancer education and screening designed to help those most in need.

“Providing free prostate cancer education and screening empowers men to re-engage with their own health,” she said.

World Cancer Day: Going beyond awareness to tackle inequity in cancer care

Cancer is a global problem, yet around 70% of deaths from the disease occur in developing countries because they are ill equipped to cope with the burden of the disease.2

That was the message behind this year’s World Cancer Day, on February 4. Thuy Khuc-Bilon, World Cancer Day campaign manager at the Union for International Cancer Control, told us about how making a noise can tackle inequity.

LIVE WEBINAR: Knowledge is power – using education and awareness to drive positive change for patients

Acute Myeloid Leukemia World Awareness Day took place on April 21, and to mark the occasion Change Together published a special series of content, including a live webinar.

It brought together a panel of advocacy experts to debate how positive change for patients can be achieved through education and awareness.

Tackling cancer-related financial toxicity to give patients a fair shot at beating cancer

In March, we heard from 16-year-old Hayley, about her journey with Ewing’s sarcoma and its devastating impact on her family’s finances.

Sharing her all-too-familiar story, she said: “My mom quit her job to care for me when I was diagnosed with cancer.”

“My dad was the only one working to support our family of four. Life became very stressful, very quickly.”

Five quick tips to get your advocacy press release noticed

When looking for media coverage, a press release can be one of the most effective tools in an advocacy group’s marketing kit. But with journalists receiving hundreds, if not thousands, every week, how can you make sure yours stands out in the crowded inbox?

As part of our Hints and Tips series of resources, the Change Together editorial team put together five top tips for getting your news noticed.

Daddy’s Boys – a new play tackling prostate cancer disparity in African-American men

Change Together reported on a US-wide tour of a thought-provoking and emotive play, designed to break the silence surrounding black America’s prostate cancer crisis.

Daddy’s Boys, produced by the Prostate Health Education Network (PHEN) and GDavis Productions tells the story of Jessie, a father of three living with a prostate cancer diagnosis.

We spoke to Thomas Farrington, who founded PHEN in 2003 following his own diagnosis, about educating through entertainment.

Research rundown: can trained transplant navigators help disadvantaged patients access life-saving treatment?

A paper published in the Clinical Journal of the American Society of Nephrology claimed that dedicated transplant coordinators could improve access to kidney transplantation for disadvantaged patients.

We took a look at the background, method, results and possible implications of the findings – and asked what else could be done to tackle inequity.

Five tips for ensuring your advocacy website is accessible

It doesn’t matter how stunning your website is – it’s useless if your users can’t access the information they need. This is true across all industries, but it’s particularly pertinent in the patient advocacy space.

We shared some simple ways to ensure websites work for everyone, as part of our Hints and Tips series.

The Simon Foundation for Continence: busting myths and breaking down stigma

With many people living with incontinence in silence, advocacy groups tasked with getting people the help they deserve have a huge hill to climb, the Simon Foundation for Continence told us.

During an interview with Change Together, founder and president Cheryl Gartley highlighted the work the group is doing to eradicate the stigma and misconceptions that stop people asking for help they need.

Would screening for overactive bladder improve diagnosis rates?

In September, new guidelines from the Women’s Preventative Services Initiative said annual screening for urinary incontinence would increase diagnosis rates among women.

We spoke to experts in the field, including urologist Dr. Ekene Enemchukwu and National Association for Continence Director, Steven G. Gregg, Ph.D., about the guidelines, their possible implications and Bladder Health Month.

Mended Hearts: Supporting the patient journey

As part of our Patient Journey series, we spoke to Andrea Baer, Director of Patient Advocacy and Program Manager at Mended Hearts.

She told us that while every patient’s journey is different, diagnosis is often the most difficult time for people with heart disease – but it is during this time they are least likely to reach out to advocacy groups for much-needed help.


References

  1. Caregiver Action Network (2018). Planning for the Nation’s Family Caregiving Needs – the RAISE Act Passed [Press release]. January 09, 2018. Available at: https://caregiveraction.org/planning-nations-family-caregiving-needs-raise-act-passed (accessed January 2019)
  2. WHO (2010). Cancer in developing countries: facing the challenge. Available from: http://www.who.int/dg/speeches/2010/iaea_forum_20100921/en/ (accessed January 2019)
2018 in review: a year in patient advocacy

Astellas Patient Advocacy is a function within Corporate Affairs at Astellas that focuses on creating, building and maintaining third-party relationships. We serve as a conduit between Astellas and external stakeholders to help improve patient outcomes, improve access issues and address patients’ unmet needs head on.

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