Author: Beth Droppert, R.N. © 2019

Sending your offspring to college brings many lists you may need to check off. One thing I missed was a HIPAA (Health Privacy Authorization) release. We didn’t realize that parents are not entitled to know about their child’s medical information unless specifically approved by their child in writing. 
 
This became a big problem when my son, who was on the varsity lacrosse team, went to dinner at a teammate’s house. The day after the dinner, the family emailed the school that their daughter (who had just arrived home from a developing country) had been diagnosed with an infectious disease needing a live vaccine.
 
The school doctor emailed us that the students had been summoned for the vaccine to the college health clinic. The problem was that my son was taking an immune-suppressing drug for an arthritis condition.  If he received the vaccine he would have been very ill.
 
I called to talk with the doctor but was told I could not discuss this issue as my son was over 18 and had to give his permission (HIPAA law). That prompted me to immediately create, and have him sign, a document so that I could talk with the clinic about the situation and save him from a potential health care nightmare. My whole family now carries the HIPAA card in their wallet and I believe everyone should.
 
This HIPAA Wallet card is available free to any WASHAA Community Member.  Community Membership is free.  If you are interested in downloading the wallet card, join as a WASHAA Community Member for free and then download the card.

Will we see you at our 6th Annual Meeting?  This year promises to be our best meeting yet, with the topic:  Conscious Living and Dying: Health Advocacy at End of Life. Check our full agenda here (or below), and be sure get your early bird discount (ends Tuesday, September 4th)! 

Register for the 6th Annual Meeting here: 
https://tinyurl.com/6thAnnualWASHAAMtg
 
Join the Washington State Health Advocacy Association (WASHAA) in Seattle, WA for its 6th Annual Meeting:
Conscious Living & Dying: Health Advocacy at the End of Life**, starting at 9 am - 3 pm, Friday, October 5, 2018 at the UW Center for Urban Horticulture in Seattle, WA. 

**This meeting is anticipated to be approved for 4.5 CEUs by BPCA, LSW, LMFT, LMHC, Care Managers, CNAs, HCA and Family Caregivers (additional fee of $25 applies for CEUs).
 
Also, don't forget to sign up for our Networking Meeting Sept 12 - Register today and we hope to see you there!

Cancer Treatment Navigator (CTN) has intimate perspective on issues faced by cancer patients in accessing investigational therapies. Our personalized services identify treatments not yet considered for cancer patients diagnosed at any stage, after a complete review of their medical history and gene mutation profile. Often, these turn out to be drugs under study in clinical trials, and not available in clinics or hospital formularies. In our experience, patients continue to face difficulty in accessing these drugs because of factors such as physician opinion on when to keep trying and when to give up hope of improving a patient’s condition. Several hopeful patients that make informed choices on wanting to try an investigational therapy end up battling odds when their cancer care team, led by an Oncologist is unaligned on the benefit/risk profile of a drug that is in clinical trials, even though there is ample safety data to warrant its use.

One of the patients we served in the past had highly metastatic throat cancer. Scientific and clinical data supported that he might greatly benefit from a drug that is approved for a special form of lymphoma. This specific drug was “investigational” for metastatic throat cancer, yet had been on the market for lymphoma for almost a decade – with thousands of patients treated and a remarkable safety record. Yet, it was the Oncologist’s decision to refuse writing a prescription for this drug, citing concerns about the patient’s safety. The irony of this story was the fact that the Oncologist did sign the paperwork for “Death with Dignity”, but could not honor the wish of the patient to try one last “investigational” option with established safety before giving up.

This is one of the cases where CTN wholeheartedly supports a “Right to Try-Law”, with provisions to truly empower patients. We would have worked hard for this patient to secure insurance coverage for this investigational drug or work directly with the manufacturer to gain access to this medicine. Above all, the patient would have been willing to pay for a 2-month supply out of pocket – enough to assess if the drug is providing benefit – and still not too long that the patient and his family would have encountered financial hardship. The only “missing link” to gain access to this investigational drug was the signature of the Oncologist on the prescription. It should be the patient’s decision to try one more time, and not of one individual Oncologist. Oncologists play a pivotal role in providing proven therapies, but often do not have the bandwidth to research and assess numerous investigational drugs or get lost in paperwork and phone calls to try secure coverage of investigational drugs. In its current form, will the “Right to try Act” be able to make a difference? We believe there should be modifications on how to assess safety before it is passed into law, so that Oncologists have to define why they don’t accept an investigational drug’s safety, instead of a mere “yes” and “no” based on comfort level dictating a cancer patients right to try.

CONTACT:
Robin Shapiro, WASHAA Chair
Phone: 206.979.8861 
 
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Independent Health and Patient Advocates Continue to Earn Enough to Help Patients Survey Shows Advocate Satisfaction and Optimism for Future of the Field
 
SEATTLE, WA -- For the second year in a row, the National Health and Patient Advocate Survey measured advocate backgrounds, practices, satisfaction and outlook on the emerging advocate field.  Health and Patient Advocates for this survey were considered to be paid professionals helping individuals navigate the health care system.
 
“The field of health and patient advocates is new but growing as the health care system remains increasingly complex,” said Robin Shapiro, Chairman of the Board of Directors for the Washington State Health Advocacy Association (WASHAA), one of the organizations fielding the survey.  “There is good news [in The Survey] for patients who want an independent advisor to help assert their wishes and navigate the health care system.”
 
Key Findings

• The profession of health and patient advocacy seems to be viable, with the overwhelming majority (68%) of independent and employed advocates making enough money to continue doing the work.  Almost all (92%) said they intend to continue doing this work in the foreseeable future.

• Advocates are highly educated.  Although there is no one specific path to a career in advocacy, almost half (48%) have a Master’s Degree.

• Advocates continue to report being optimistic, with the vast majority (92%) reporting they believe that the advocacy field will grow in the next five years.
• The vast majority (90%) of advocates are hired independent of the health care system.
• Medical/Navigational Services were the advocacy service most frequently requested by patients (67% of advocates reported this as the top service they were hired to perform and 97% reported that Medical/Navigational Services were one of their top three requested services).

 
About the Survey
The survey was conducted by representatives of the Washington State Health Advocacy Association (WASHAA) and the Alliance of Professional Health Advocates (APHA) in order to begin measuring the backgrounds of advocates, some of their work practices and their outlook on the field.  For a copy of the entire survey, please go to: www.advocacycoalition.org.
 
Recommended Actions for Patients
Don’t go alone!  Navigating health care by yourself is challenging and potentially dangerous.  Always educate yourself and have someone (an advocate who can speak for you or help you speak for yourself).  We recommend:

• Join or support health advocacy organizations to help ensure that the field will continue to grow and advocates will continue to be available
• Identify an advocate for yourself before a health crisis emerges (this can be a family member, friend and/or a professional advocate)
• Educate yourself about what being an advocate means, so that you are can effectively discuss your personal health goals, values and choices.  Join WASHAA at our upcoming events here, including our Patient No More Talk at the Phinney Neighborhood Village February 8: http://www.washaa.org/events1.html

 
Recommended Actions for Advocates

• Join organizations to meet other advocates to help keep up with advocate business practices
• Share your success and mentor advocates entering the field to help the field grow
• Track and participate in continuing education and credential of the practice

 
About WASHAA
The Washington State Health Advocacy Association (WASHAA) is a non-profit organization dedicated to helping people transform from patients to full participants in their health.  WASHAA fulfills our mission by: 1. Raising awareness about health advocacy 2. Teaching health advocacy skills and 3. Connecting people to local, relevant health advocacy resources.  For more information visit us at www.washaa.org.  We can’t do it without you - consider joining as a ‘Associate (Supporter) Member’ http://www.washaa.org/become-a-member.html to help our organization grow and never miss a WASHAA update.

Hi WASHAA Supporters and Members,

With the holidays approaching, you can help support Washington State Health Advocacy Association!

How?  By spreading the word about AmazonSmile! 
Where? Amazon Smile (www.smile.amazon.com)

​What is AmazonSmile? AmazonSmile is a website operated by Amazon that lets customers enjoy the same wide selection of products, low prices, and convenient shopping features as on Amazon.com. The difference is that when customers shop on AmazonSmile (smile.amazon.com), the AmazonSmile Foundation will donate 0.5% of the price of eligible purchases to WASHAA. 

Many of us use already use Amazon for our shopping needs.  I invite you to click on the following link and ensure you start at Amazon Smile, look for Washington State Health Advocacy Association, and begin your shopping experience there. Every little bit assists WASHAA on their goal to growing the organization, creating more valuable events and webinars, and spreading the word about Health Advocacy in WA State.

Email us at info@washaa.org with any questions or concerns. Thank you in advance for your support!

Top 5 Reasons to Attend If You Are A…..
 
PATIENT

• Meet local health/patient advocates
• Learn what health advocacy is
• Understand the history of health advocacy
• Contribute your story to demonstrate the need or value of health advocates

 
ADVOCATE

• Network with other advocates in the state
• Join WASHAA to build the health advocate market
• Learn what health advocacy initiatives are happening in our state
• Share your opinion about who qualifies to be an advocate

 
INTERESTED IN BECOMING A HEALTH ADVOCATE

• Network with other advocates in the state
• Join WASHAA to build the health advocate market
• Discover what health advocacy initiatives are happening in our state
• Learn about academic and certificate programs for people who want to be advocates
• Engage in health advocacy programs that will make a difference

 
ACADEMIC INSTITUTIONS

• Join the conversation about what programs may be valuable for health advocates
• Discuss the challenges and opportunities with certificate versus degree programs for health advocates
• Stay abreast the national effort to credential health advocates
• Learn about academic and certificate programs for people who want to be advocates
• Network with other academic colleagues interested in advocate programs from our state

 
PROVIDERS

• Meet local advocates you may want to partner with
• Learn how private advocates can support your practice
• Discuss where you see health advocates providing the most value
• Share your success stories about how you utilize patient advocacy in your practice
• Contribute to the discussion about why providers should or should not be advocates

By Robin Shapiro, WASHAA Chair

It is not every day that you walk into a work meeting and discuss race - or white fragility (defined as the inability for white people to tolerate racial stress, preventing them from engaging constructively across race), but at a recent WASHAA meeting that is exactly how we started it. Led by Robin DiAngelo, our working group was challenged to consider how an absence of diverse experience, opinion and background leaves a gaping hole in whatever work is pursued.  

Her discussion provoked our thinking and shined a light on our own limitations and failings based on the environment we live and operate in. We all like to think of ourselves as anti-racist. But, I know as a white woman I cannot totally understand what it means to be another race.  After listening to Robin DiAngelo, I would like to learn more and be engaged in trying to understand better and take action to support anti-racist living.

The reality is most of us have a long way to go to taking action to really understand what 'inclusive,' and 'diverse' mean in everything we do. Our brief time with Robin DiAngelo sparked a lot of questions from our group:  how do we go about including people from communities we don't know? Do we stop working on our program until we figure this out? What would it look like to invite and incorporate different needs and priorities from communities?

Our working group discussed these questions and knowing that we, as a primarily white group have a lot of work to do. We will be contacting communities to see how we can engage in conversation about health advocacy and how we see and experience health advocacy challenges from differing points of view. If you are receiving this newsletter and want to join the conversation - please contact WASHAA at info@washaa.org. If you have suggestions about communities or people for us to talk with and/or people who want to join our efforts, we would love to hear from you!

DiAngelo, is an expert on race relations and is the current Director of Equity for Senior Services, Seattle/King County. She has been a consultant and trainer for over 20 years on issues of racial and social justice.

Have comments? Please Email Robin and submit your feedback