Asked to waive my HIPAA rights, and always excited to do so.

As much as my Komen 3-Day plans continue to occupy a significant portion of my daily attention, I have decided that my blog will benefit from judicious entries. At this point, I plan on a weekly post in hopes that content will be more varied than daily "loved today's hike" that would surely become the core of more frequent posting.

A Sunday morning hike to the top of Eucalyptus hill.

Receiving donations continues to make me giddy - not just because I see my fundraising target moving closer (less than $900 to go!) but because I make it a point to pause and consider the various ways each donor enriches my life. I smiled seeing Laurel's donation because she is my renaissance woman. From florist, to zoo staff, to avid 100 Women that Care member, Laurel does it all and in each of her endeavors makes the world a better place. I continue to learn every time I am with her. Carole's donation brought me joy simply because she found a free moment to make it! We miss Carole on so many of our walks because she is the caretaker extraordinaire. Her family is so very fortunate to have this daughter, wife, mother, sister who takes care of her family either directly or by shouldering the lion's share of responsibility. Her friends are equally fortunate to have her bright smile whenever she is free to bring Loki's buddy Shadow out to play.

Smiles in Crystal Cove

While I anticipated the frequent email nudges to continue fundraising and exhortations to "don't be shy," "ask everyone," "set the bar high," that I most assuredly receive, I also receive communications geared towards making sure I have the tools to complete the physical component of the walk, such as invitations to webinars, recommended training schedules, and an assigned coach.

But this week, I received an email that genuinely excited me. I was invited to be a participant in ShareForCures. Participating in this program meant authorizing my providers to release my private medical information to a database where it will be stripped of identifying factors such as my name and be accessible for research.

With apologies in advance to certain friends who may read this and find fault in my over-simplified explanation, HIPAA is a research disaster.

As commonly happens, good people saw a problem (discrimination against people with certain medical issues such as AIDS and non-consensual data and tissue sharing such as with Henrietta Lacks) and tried to fix it. The cure was overbroad and its side effect was to eliminate the world's most powerful set of data available for medical research.

Prior to HIPAA, it would have been perfectly legal to have a database with an entry for "Patient Number 123456, Date of Diagnoses July 21, 2021, Female, Caucasian, 49, Bilateral Mastectomy, Right Breast Primary Tumor 2.3 cm IDC, Secondary Tumor 1.1 cm IDC, Left Breast 2mm ILC, ER+, PR+, HER+, METS to 3 out of 7 Lymph Nodes . . ." This database would have been augmented with all of the information pertaining to me and all other patients as our treatments progressed and available to researchers as a batch of raw data with patient identities removed.

Why is the severe restriction of the ability to share medical information that has been stripped of individual patient identifiers a particular issue in the United States? Knowing what is likely to cause a problem is the first step to solving the problem. The US possesses the world's most diverse genetic population. Research based on the US population is more capable of determining if a particular issue is driven by genetics or environmental factors. If those of similar genetic origin are exhibiting significantly higher incidences of heart disease in the US than in their countries of origin, perhaps differences in lifestyle are to blame. If those from a Scandanavian gene pool evidence a particular disease more frequently than the general population regardless of residence in the US or country of origin, researchers could look into genetic causation. While all countries are more diverse than ever, the size of the US and the longevity of its history as a nation of immigrants from all continents can provide a resource smaller more homogenous populations simply cannot replicate.

This is the second time I have had the opportunity to be part of the future of medicine since my breast cancer diagnosis. The first time I met my fabulous oncologist, he asked if I would agree to be part of a program donating all tissues removed from me to research. This means that my breast tissue, blood, uterus, ovaries, and more is all available to scientists to help cure breast cancer or any other issue they believe can be better understood with the aid of portions of my body that needed to go anyway. My consent is ongoing, so all future leftover tissues will be retained to advance medicine. In return, I received a copy of my full genetic panel and know that I don't carry a single one of the 288 then known genetic factors of disease and will be updated as additional disease linked genes are identified. I also have the privilege of knowing that I might contribute to a legitimate cancer vaccination or otherwise be part of making someone else's life better.

As for walk preparation progress, it is a bit early to expect a consistent upwards trend as that would have me peaking far too soon. My goal right now is consistent movement and care for my body. To that end, I walked 39 miles last week. My walks took me to Crystal Cove in Laguna/Newport, Rosie's Dog Beach in Long Beach, and Aerojet, Butterfield-Meadows, Torrey Pines, and Eucalyptus/English Springs trails in Chino Hills.

Do you live in SoCal and have a favorite trail? Invite me to come walk with you!