In memory of Blandina Khondowe

We are very sorry to announce that Blandina Khondowe, the first recipient of the Barbara Brenner Breast Cancer Activist Scholarship, died of breast cancer in November 2020. She was 40 years old. We are posting the blog posts that Blandina wrote after attending the SABCS in 2019 as a tribute to her too short life and activism. You can read them here.

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Barbara Brenner Breast Cancer Activist Scholarship

Susie here, using Barbara’s blog to alert you to a new opportunity for activism. Barbara has been gone for six years, but her message lives on. This post announces the establishment of the Barbara Brenner Breast Cancer Activist Scholarship, which is intended to enable an activist to attend the San Antonio Breast Cancer Symposium. I encourage you to share this announcement with your friends who might be interested – even if you think they already received this announcement.


The Barbara Brenner Breast Cancer Activist Scholarship will be awarded to an activist who is committed to carrying on Barbara’s practice of telling truth to power and who wishes to attend the San Antonio Breast Cancer Symposium (SABCS), the largest scientific meeting in the world devoted exclusively to breast cancer research, treatment and survivorship. The 2019 SABCS will be held December 10-14 at the Henry B. Gonzalez Convention Center, San Antonio, Texas.

Every year, tens of thousands of attendees from more than 90 countries around the world gather at SABCS. They are physicians, researchers and other stakeholders, including activists who want to know – and comment on – what research is being done, what directions it is taking and how it actually affects treatment decisions and outcomes for people who have been diagnosed with breast cancer.

If you are reading this post, you know that one of the leading activists was Barbara Brenner, Executive Director of Breast Cancer Action from 1995 to 2010. Barbara attended the symposium every year, disseminating her analysis of the information through nightly emails to thousands of followers in BCA’s database. She often asked pointed questions from the microphones and challenged faculty, as when, in response to a presenter’s comment, she famously declared, “Patients don’t fail treatment. Treatment fails patients.”


The scholarship is intended to cover the costs of transportation to and from SABCS, conference registration, housing, meals, minor incidental costs while attending the symposium and a small stipend to cover the potential cost of lost income. The amount of the award in 2019 will be $4,000.


  1. Must have been diagnosed with breast cancer
  2. Must be familiar with breast cancer science, and have the ability to write about it for the general public.
  3. Must demonstrate previous breast cancer or health advocacy/activism experience or show why any other experience is relevant.
  4. Must not be employed by or receive funding of any sort from any entity that profits from or contributes to the breast cancer epidemic


  1. Must attend the entire conference, including educational sessions, poster sessions, and nightly mentor sessions.
  2. Must live tweet during the conference to relay breaking news and critiques.
  3. Must write 2 blog posts about the conference that will be published in Barbara’s blog, Healthy Barbs, or another site to be identified by the scholarship committee. These articles may also be published elsewhere, with a reference to Healthy Barbs, at the attendee’s discretion, subsequent to their appearance in Healthy Barbs and subject to approval by the scholarship committee.


Send a personal statement describing your interest, qualifications, and how your attendance at the symposium will further your work in breast cancer activism, along with a CV, by June 30, 2019 to the following email address:

The 2019 recipient will be selected by the Scholarship Committee no later than August 31.

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Remembering Barbara

Barbara was eulogized by Rabbi Margaret Holub, of the Mendocino Coast Jewish Community, and five speakers at her funeral on May 13, 2013. Their eulogies are published on the Afterwords page of this blog.

A number of obituaries were published in print and online. Links to these tributes are also published on the Afterwords page.

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Funeral arrangements and after

Funeral services for Barbara will be held on Monday, May 13, at 10:00 AM (sharp!) at Sinai Memorial Chapel, 1501 Divisadero, San Francisco, CA 94115.

Burial will be on Tuesday, May 14, at 1 PM at Ocean View Cemetery, Fort Bragg, CA.

To get to Ocean View Cemetery (once you get to the Mendocino area on Highway One): Take Highway One north through Fort Bragg to Pudding Creek Road. Turn right (east) and then take the first left turn into the cemetery.

Because Shavuot begins on Tuesday evening, Shiva will not be observed formally. Susie will be observing informally, and visits are welcome in the afternoons and evenings from Wednesday evening through next Monday. We will gather at 6:30 each evening to share amusing stories about Barbara. (If we have a minyan, we will also say Kaddish.)

If you’d like to bring some food for people to share, don’t worry about Susie’s (in)famous food restrictions, but please avoid pork, shellfish, and red meat.

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Barbara Brenner 1951-2013

Barbara Brenner passed away peacefully at home on Friday evening.

Funeral services will be held in San Francisco, with burial in Fort Bragg. Arrangements are pending and will be posted Sunday on Barbara’s blog, Healthy Barbs (, our Caring Bridge site (, barbarabrenner community), and Barbara’s Facebook page.

Contributions in lieu of flowers may be made to the Barbara Brenner Rapid Response fund at Breast Cancer Action, 55 New Montgomery Street, Suite 323, San Francisco, CA 94105 (

Thank you for all your love and support.

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Thanks and Blessings

As my life comes to an end, I want to thank readers of this blog (and our Caring Bridge site for reading all that I have written while I deal with ALS. I’m sure some of what I wrote was difficult to read, some of what I wrote helped others, while other pieces just made you think. This blog will be up awhile — and some ambitious person might turn it into a book. If you think of others who might benefit from anything I’ve written, please send it along to them.

I have been blessed to lead a rich life, full of love and culture and travel and work that had meaning for me. I have no regrets except that I got ALS in the first place.

I have met amazing people both in person and on-line. Everyone I have come in contact with has had something unique to offer the world. The world is a better place because these people are or were in it. Some of these people I have mentored (and you know who you are), others have taught me. What I know about all of these people is that I have been blessed to know them, and that they will succeed at what they set their hearts and minds to do.

In the Jewish tradition there is a Priestly Blessing. I copy below it because it is what I wish for all readers of these words:

May the Lord bless you

and keep you;

May the Lord make his face shine on you

This is sort of what the priestly blessing looks like at my synagogue, except that the rabbi and a number of members of priestly tribe are women

This is sort of what the priestly blessing looks like at my synagogue, except that the rabbi and a number of members of priestly tribe are women

and be gracious to you;

May the Lord turn his face toward you

and give you peace.



© Barbara A. Brenner 2113

Posted in Illness | Tagged | 83 Comments

The Legislature and Breast Cancer: Not a Good Match

The Legislature and Breast Cancer: Not a Good Match

According to California law, starting on April 1, 2013 (I note that that was April Fool’s

This is where the California meets to make laws. Nice building.

This is where the California meets to make laws. Nice building.

Day), women whose mammograms revealed dense breast tissue will get the following notice:

Your mammogram shows that your breast tissue is dense. Dense breast tissue is common and is not abnormal. However, dense breast tissue can make it harder to evaluate the results of your mammogram and may also be associated with an increased risk of breast cancer.

This information about the results of your mammogram is given to you to raise your awareness and to inform your conversations with your doctor. Together, you can decide which screening options are right for you. A report of your results was sent to your physician.

I would call this silly legislation, but that is a redundant phrase for far too much that the legislature does.

What You See Is Not What You Get

Here are the problems: About 40% of women have dense breast tissue (as the notice says, it’s not abnormal). Not all dense breast tissue is associated with an increased risk of breast

A dense forest. Dense breast tissue is white, so it wouldn't show up here.

A dense forest. Dense breast tissue is white, so it wouldn’t show up here.

cancer. And, when there  is an increased risk, it’s not increased by very much. A woman who is 40 without dense breast tissue has a risk of developing breast cancer in the next 10 years of 1.47%. A 40 year old woman who has dense breast classified as grade 4, has a risk of developing breast cancer over the next 10 years of 2.38.

Dense breast tissue is categorized on a scale of 1 to 4, with 4 being the most dense. Under the current state of our knowledge about breast cancer, we “know” that 1 or 2 breast density is not associated with an increased risk of breast cancer. Women with breast density of 1 or 2 will not be notified under the law.

Women with density of 3 or 4 will be notified under the law. There’s the rub. We know that breast density of 4 is associated with a slightly increased risk of breast cancer. A woman in her 40’s with very dense breast (a grade 4) has the same risk of breast cancer as women in their 50’s. We have no evidence about whether the risk — if it is higher at all — for women with grade 3 breast density.

When Legislatures Prescribe

There are two problems with this law. One is that it requires telling women that they may be at increased risk of breast cancer when they may not be. Given that women

This is what panic looks like.

This is what panic looks like.

overestimate their risk of breast cancer to begin with, this type of notice will panic some women.

The other problem is that the law tells women to explore with their doctors which screening options are right for them to reduce the risk of a late-stage diagnosis. But the only screening option that has been shown to do this is an annual digital mammogram for women in their 40’s. Women in their 50’s with grade 4 density do not risk a late diagnosis if they have mammograms every two years. Annual mammograms for this age group which result in more false positives and unnecessary biopsies.

Medicine and Lawmakers: A Match Made Somewhere Other Than Heaven

That heading could be about abortion policy, but that is not my topic today. The legislature cannot deal with nuance. It makes broad laws that, in the best case, benefit most people on whom the law has impact. So laws that purport to mandate medical care will always miss the mark.

For a good analysis of the “dense breast” law, check the story on KQED, the San Francisco-based NPR affiliate.

Some years ago, when the first recommendations were made by scientific organizations that women in their 40’s didn’t need annual mammograms, Congressional representatives, all of were men, took it upon themselves to write laws mandating annual mammograms for women in their 40’s. They gained political points with women in their 40’s whose breast cancer had been found with mammograms. They did nothing to advance the public’s understanding of breast cancer screening issues.

The California law is no better.

© Barbara A. Brenner 2013

Posted in Breast Cancer, Health Policy, Medical Science | Tagged , , , | 4 Comments

Telling the FDA What I Think About ALS Drug Trials

As readers of this  blog know, I have taken issue with a number of things related to how ALS drug trials are run. Some people at the Food and Drug Administration (FDA) read my blog and the comments to them. In response, the Agency has set up a public hearing for February 25 in the Washington, D.C. area to consider  comments on the FDA’s “Regulation of Clinical  Trials  of Drugs for the Treatment and/or Management of ALS.”

Since traveling to hearing was out of the question for me, I submitted a written statement for the FDA’s consideration. Below is the statement I submitted, but without the pictures.

The agency wants to hear from you.

The agency wants to hear from you.

If you have things to say to the FDA on this topic, you have until March 25, 2013 to submit a written statement. Go to /, search for the name of the hearing, click on that name when you locate it, and you will see how to submit a comment.

Gentle Persons:

As someone living with ALS and a health activist, I very much appreciate the opportunity to submit my thoughts about improving ALS clinical trials. I have commented many times on this topic at my blog, Healthy Barbs, at

For a disease that is so devastating and that has seen so few advances in treatment, it is time to consider patient needs in the design of clinical trials to a degree that has not been demonstrated to date. I think this can and should be done in five areas:

— Trial eligibility

— Subset analyses to deal with new devices or drugs that become available after a trail has started

— Expanded access

— Release of data from negative trials

— Independent trial ombudsman

Trial Eligibility

It is my understanding that all ALS drug trials limit participation to patients are less than 2 years from diagnosis to. Given that most ALS patients live longer than 2 years, this eligibility requirement excludes many people from participating in trials. People with more advanced ALS also want to participate in trials, and may benefit from any drug found to work for people with less advanced disease. Drug trial sponsors should not be permitted to limit trial access to patients within 2 years of diagnosis.

Subset Analyses Should Be Required

In the EMPOWER trial of dexpramipexole, several patients, including me, wanted to get a diaphragm pacer while in the trial. The pacer was not excluded when the trial started. The exclusion was added in a later consent form — I believe it was the fourth one. The trial was near it’s end, so that there was sufficient data from participants who had joined the trial early on. The trial required at least 12 months of participation; I had been enrolled at the point for 15 month. I requested that the sponsor either abandon the pacer exclusion or commit to subset analysis that would permit me and those like me to stay in the trial without sacrificing of the possible life-extending benefits of the pacer. I was rebuffed at every turn.

I did learn later that subset analysis was done on the dex data.

Given the range of health challenges that ALS patients face, clinical trials that test only  one drug or device leave participants with terrible choices. If sponsors of large Phase III trials were required to subject their data to subset analyses that include patients on a second drug or with a device that might improve quality or length of life, the patients will have more incentives to participate in trials and sponsors would recruit trial participants faster.

Expanded Access

In light of the constraints on ALS clinical trials and the absence of treatment options, it is imperative for patients that each Phase III trial have an expanded access component whereby patients, with their doctor’s support, could have access to the drug despite their ineligibility to participate in the trial. There are many ways to structure such programs. It’s the concept that has to be a commitment required of sponsors.

Release of Data from Negative Trials

The field of ALS drug research is littered with the detritus of negative trials. Negative trials can also be informative, but  only when the data from the negative trials are publicly released. The FDA should require sponsors to release to the public the  data gathered in negative trials, with appropriate safeguards for patients privacy.

Independent Trial Ombudsman

In large trials, sponsors should be required to appoint independent ombudsman to address

Let your voice be heard.

Let your voice be heard.

the concern of trial participants. The CEO of the sponsor is hardly a position to address those concerns, having the shareholders interest as his/her primary concern.

I hope the FDA will take these concerns and suggestions seriously.


Barbara A. Brenner

© Barbara A. Brenner 2013


Posted in ALS, ALS Treatment, Health Policy | Tagged , , | 1 Comment

Has NBCC Lost Its Way?

Has NBCC Lost Its Way?

I’m currently reading letters sent to me by community college students in Utah who watched Pink Ribbons, Inc. and have questions about become activists. Many of these students wonder how they might become activists if they are poor. I will tell them that activism doesn’t require money. But the National Breast Cancer Coalition (NBCC) seems to think differently. And that is way too bad.

I’ve written about NBCC before. I even devoted a whole blog post to the organization,

A deadline makes sense for finishing a peper, not ending breast cancer

A deadline makes sense for finishing a peper, not ending breast cancer

entitled “NBCC: The Promise, the Process, and the Problems.. I stand behind everything I said in that post, but NBCC’s most recent move has me wondering whether the organization should shut its doors.

Here’s the deal. NBCC is known in the breast cancer world for, among other things, hosting an Annual Advocate Conference in the spring. People come to network, hear speakers and panel discussions on relevant breast cancer topics, get oriented on NBCC’s legislative agenda, and lobby members of Congress on that agenda. While I have never attended this

Happy advocates at an earlier an earlier NBCC conference.

Happy advocates at an earlier an earlier NBCC conference.

conference, I’ve heard lots of good things about it over the years. There was a fee for attending (that ranged from $125 to $245 depending on how far in advance you registered and whether you were an NBCC member or not) and scholarships were available.

This year NBCC has changed the name of its conference to “Breast Cancer Deadline 2020 Advocate Leadership Summit.” To attend, leaders have to raise or give a $1000 donation to NBCC. So, for the opportunity to lobby Congress on the ridiculous  “breast cancer deadline” that NBCC has set, you have to pay big money.

Women without cash need not apply for this year's conference.

Women without cash need not apply for this year’s conference.

I’m sure NBCC has a justification for this fundraising ploy, but it turns activism on its head. You shouldn’t  have to be rich or have wealthy friends to be an activist or an “advocate leader.” What you need is heart and commitment, and others who share — or might be persuaded to share — your view of the world.

If NBCC is having money troubles, could it be an indication of doubt on the part of donors in the organization’s mission or direction? In any event, to try to solve money troubles on the backs of people who are working hard on breast cancer issues is wrong-headed. If this approach means many fewer people at the NBCC conference, maybe the organization will re-think its approach. In any case, NBCC is turning their conference into a very different event than it was. I have trouble believing this conference will be a success.

Whether it’s a success or not though, I firmly believe that to require a donation of $1000 for a breast cancer advocacy conference is simply wrong.

As 2020 approaches, I hope some people will remember that was the deadline that NBCC set to end breast cancer forever. If NBCC is still around then, ask them what happened to the deadline. Maybe it will die with this year’s conference.

© Barbara A. Brenner 2013

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Steve Gleason: A Rare Celebrity Doing Good by Talking About His Illness

Steve Gleason: A Rare Celebrity Doing Good by Talking About His Illness

She  looks surprised.

She looks surprised.

People who know me know that I am no fan of either football or celebrity spokespeople for illnesses they have had. In that light, this blog is bound to surprise those folks.

You have probably noticed that when a famous people get sick, they often become spokespeople for the illness they have. In my memory, the first person to do this was Betty Ford, who spoke publicly about her breast cancer in 1974. (Okay, I’m old enough to remember that.) That act of courage was followed by Betty Rollin, a prominent  TV reporter, who published First You Cry about her breast cancer experience in 1976.

Since then, it’s been pretty much downhill. Some celebrities lend their names to organizations raising awareness. In breast cancer, that is so not helpful: everyone is aware

She can sing. Breast cancer advice yiour  should get elsewhere.

She can sing. Breast cancer advice your should get elsewhere.

of breast cancer already unless they live under a rock. Other celebrities give (bad) medical advice based on their experience. Sheryl Crow, for instance, told the world that her breast cancer was the result of drinking water out of plastic bottle that had  been warming in the sun on the back seat of her car. That email  travelled the world for years — coming back

like a bad penny. For all I know, it still circulates. It’s not a good thing to drink water out of plastic bottles, but neither does it give you breast cancer. Or Robin Roberts, whose breast cancer was missed by a screening mammogram, who nevertheless urged women to get mammograms.

As for football, I consider it a game of unnecessary violence, played by some people who get in trouble for

I didn't want want  a violent image in this post. Enjoy this.

I didn’t want want a violent image in this post. Enjoy this.

being violent in society, often towards women.

So when ALS folks (called PALS — People with ALS) got excited because Steve Gleason, a famous retired football player who had been safety with the New Orleans Saints, started speaking out about his ALS, I was more cautious because the breast cancer experience with famous people had been, to my mind, less than helpful.

Steve Gleason and Team Gleason — folks are

Steve Gleason, football player.

Steve Gleason, football player.

working with and supporting Steve and his family through his ALS — have persuaded me out of my caution. In fact, I’m thrilled by what they are doing.

Here’s the deal. Team Gleason ( has put together an ALS PSA (public service announcement) that will air during the Superbowl in New Orleans, where Steve and his family live. Having seen the ad on line, I hope it airs many times after the game is over. In case you won’t or didn’t watch the Superbowl, or missed the ad, you can watch it here.

What’s important about this ad from my perspective is that there is no attempt to sugar coat anything, or make people feel good about ALS. This is not an illness that is a “gift” and don’t let anyone suggest to you that is. This is ALS awareness at its best and I hope millions of people see it.

Steve Gleason, football player with ALS.

Steve Gleason, football player with ALS.

If you are on Facebook, post the ad there. Or forward this blog and encourage people to watch the ad. People need to see this.

Thanks to you Steve and Team Gleason. Lou Gehrig can finally be retired. You are giving hope to everyone affected by ALS, by raising awareness of the existence and realities of horrible but little known disease, and by calling on people to act. That is no mean trick.

© Barbara A. Brenner 2013


Posted in ALS, Breast Cancer | Tagged , , , , | 14 Comments