12 tips for starting — and growing — an employee network

If you work at a corporation of a certain size, you’ve doubtless heard of “employee networks” — also known as “employee resource groups” or ERGs. These are groups typically started by employees, motivated by the grassroots and sharing a common interest or characteristic, like a culture or race, or playing tennis, or being LGBT.

I’m not sure what percentage of corporations have or support employee networks, and I know that smaller companies and startups don’t usually have such groups (perhaps because they tend to be diverse by default?), but internally at SAP, they’ve grown in prominence over the last few years.

Since part of the reason SAP’s employee networks have been rejuvenated in the past few years parallels and perhaps has been inspired by our LGBT employee network transformation, I wanted to share a group of suggestions I published internally out loud here in the real world, to have a conversation about common experiences and hopefully also learn new tips.

pride@sapThree years ago in 2010, the LGBT presence in our major SAP Bay Area location was lackluster at best. Today, especially since the release of It Gets Better: SAP Employees one year ago, we are a vibrant community – not automatically and not without work, but we are far less disenfranchised.

What did we do to bring this change? As near as I can figure out, these things are what made a difference:

Address an unaddressed need

First make sure you are addressing a real need, and a need that is not addressed elsewhere. Look around and make sure there aren’t other groups that are also trying to attract members — combine and/or build together.

For us, the need was clear: There was practically zero momentum in our local LGBT group – there was much disenfranchisement and no goal or sense of community. We knew there were many of us out there, but we were isolated locally. Meanwhile, national laws still lacked (and are getting better, but in most places continue to lack) protection for LGBT families.

All our goals and activities flowed from knowing these needs.

Start locally

Ask and listen to what your local community needs. The nature of our employee network made it critical that we have a local presence – not only are there differing laws from state to state, but there are differing cultures and levels of acceptance per workplace. For us it was important to create a locally galvanized group — and we also chose a name that expressed our local nature — Pride@SAP Palo Alto. We made it a point to be a sub-group of the larger global group — not a different group, but a part and working together. The larger global group has much established practices and brand value already that has also been essential.

It can start with just one person – but one person alone can’t do it

There needs to be at least one passionate person who can devote some volunteer time to engaging a new initiative. It simply won’t fly without someone organizing things — administering communities, creating mailing lists, and getting monthly lunch rooms and appointments alone can take a lot of time, not to mention actually having activities.

But do not do it alone or expect one unsupported person to make a difference. Tap into resources from Global Diversity and Communications, if available.

It must be grassroots — but ask a local executive to help generate momentum

In my experience it doesn’t work all one way or all the other — it needs to be a grassroots group, but often disenfranchised people will stay this way unless they feel there are executives who care.

In our case, one key moment in kicking off our rejuvenation was a roundtable lunch attended by the Managing Director at Labs. This brought out many many people who were formerly hidden in the woodworks.

Welcome “straight” supporters

For us, it has been absolutely key to welcome straight supporters, who have been key to a successful re-establishment of the group. Staight folks might not always know the discrimination and difficulties you face (all the better to educate), but they often care about LGBT issues, experience homophobia, and have non-straight friends and family just as we do. If you want people across the company and spectrum to care, invite them to share how it is they care too. Be inclusive.

Use your internal platforms to create an internal community

This is essential for easily starting discussions, storing documents, starting activities and collaborating. Decide if you want this group to be open or closed. Inside some companies, LGBT groups are closed and let you enter by approval. In others, they are open. We have a combination of both. This is by design: when people join an open community, everyone in the company can see you joining. However for LGBT folks where not everyone is comfortable being “out” — you may need to welcome people to join at all levels of comfort of being “out.”

Make an email distribution list

And circulate emails with, for example, the notes from the roundtable summary above — linked also in a discussion on Communities. Encourage people to join the discussion online in the group. This is (still) often the most effective way to make sure you reach everyone you want to reach.

Create a core team

Identify 3-4 passionate members to help ramp up the group and to have a diverse start to the goals and activities

Build a list of goals, objectives, and activities

With the core group, build up a list of what you will do and why it matters. Let people know what this is and contextualize why it matters inside your company and in the world.

At a minimum, have regular monthly lunches in a regular room, in which you update on goals and activities, listen to and respond to conversations, and encourage new goals.

Network with similar local groups from other companies; track and talk about relevant external events.

Be specific and precise around “asks”

We developed a list of “asks” of local management as well as Global Diversity that included budget and communications, to help drive visibility. Be clear how these asks contribute to not just helping the employee group, but to the betterment of the company as a whole (according to the goals and objectives, above).

Come together around a cause

Your network can come together as a community around a cause that you collectively feel passionate about. For example, the LGBT community in Labs North America come together as Pride@SAP Palo Alto around the cause of anti-bullying. Our first notable event, a film night screening an anti-bullying film, brought us together around this cause and also set the framework for our It Gets Better film. By doing this it gave more purpose and focus for the group, which lead to an extraordinary outcome—the film and boarder awareness of the issue of teen LGBT suicide, which was cathartic for all of us involved.

Measure growth

Measure growth in the group and achievement of goals and report back to Global Diversity to raise visibility (how the group generates “ROI”).

One interesting way other companies’ LGBT groups measure ROI is by tracking successful hires from diversity recruitment efforts, for example.

Have you created an employee network or been a part of helping one grow? I’d love to hear from you.

10 Camera Phone Videos that Shook The World

“A camera on a phone has only aided the perverted, the nosy, the violent, and the bored.”

Thus proclaimed Michael Agger writing for Slate in January 2007, just as “cameras on phones” had really begun to hit the mainstream.

Adding video capability simply increased the “madness,” according to Agger. The most prominent uses of these devices that he could dig up at that time included “happy slapping,” “streetkissing,” and “old-fashioned humiliation,” leading him to conclude that “In glorious retrospect, it seems like a terrifically bad idea to give the world a spy camera that looks and functions like a cell phone.”

Even as he wrote that, YouTube, as the platform that made it easy to actually share camera phone video content, had been blocked in Thailand. Since the platform’s launch in 2005, it has been taken seriously enough to be blocked in at least 12 countries – not to mention by corporate firewalls and in school districts across the USA.

So many of us now produce and consume camera phone content as a matter of course and hardly think of it as “madness.” Yet if Agger’s swift dismissal of the camera phone strikes you as silly today, try this trick: substitute the words “Google Glass” (or maybe even “dashboard camera”) for “cell phone camera” in that Slate article. It works. And will probably continue to work, every time a disruptive new technology is introduced.

I’ve had a keen interest in the transformative power of being able to create and share content easily — equally relevant inside an enterprise such as SAP (where I work) as out. In 2010, I conceived and managed a project that made it easy for anyone to share a video inside SAP. That project achieved astronomical success and came to be known as Media Share, now formally “productized” on our corporate portal. Yet we also had our naysayers from the outset, insisting we would get in trouble for allowing people to share whatever content they pleased.

This was in fact the thing I liked best about working on Media Share: helping people represent themselves who could not before. You could always publish a video and share it – if you had funding and your content was vetted. To be sure, we’ve seen slick promo videos, formal training courses, official communications and corporate advertisements alike (not to mention our powerful and meticulously produced It Gets Better: SAP Employees) – all of which stand to gain from the ease of distribution on video platforms such as YouTube and Media Share. These things of course have their place — but sharing raw footage from your hand-held device cuts more profoundly to the bone.

Why?:

  • It’s ok to be an amateur. It might even make you more credible.
  • You don’t need to be a corporation or have funding to create content. You don’t even need a fancy camera.
  • You don’t need anyone to tell you it’s ok.
  • You can – in fact, you probably will — easily share your content, whether or not your content “goes viral.”
  • As you take your hand-held device around the world with you, you are a witness, a reporter, a human.
  • This changes EVERYTHING.

Agger did concede in Slate in 2007 that some camera phone videos can “testify to the power of first-person witnessing, and how a digital copy of that witnessing can upend neat narratives and certainties.”

What Agger failed to contextualize is that this “upending” is more than just bored hooliganism. This is “Truth 2.0.” When you represent your world by sharing your camera phone video, you do more than put the You in YouTube – you MAKE the news.

Sure – with over 60 hours of videos uploaded to YouTube every minute, there is more footage than anyone will ever see and perhaps care about, but you need the dinner parties, the elephants, the fire-breathing kittens, the everyday moments of life to have the really big moments that shake the world. In short: You actually need to be human.

And if you still doubt that the camera phone has changed the world (and not just for perverts and the nosy, violent, and bored), or rather – that you can change the world because you are a human using your camera phone, browse the list and remember the moments below, listed in the order in which the events they recorded occurred.

As beloved San Francisco Bay Area radio personality Scoop Nisker used to say: “If you don’t like the news… go out and make some of your own.”

 

December 26, 2004
Indian Ocean Earthquake & Tsunami

This is just one of many videos about this event, which was “the first global news event where the majority of the first day news footage was no longer provided by professional news crews, but rather by citizen journalists, using primarily camera phones.”

[youtube:http://www.youtube.com/watch?v=zPUlU3Uwi2g%5D

 

April 23, 2005
Me at the zoo

YouTube co-founder Jawed Karim in the first YouTube video. Ever.

“Elephants have really, really really long trunks!”

Because… without elephants we would have no YouTube. Or something.

[youtube:https://www.youtube.com/watch?v=jNQXAC9IVRw%5D

 

July 7, 2005
London underground bombings
Perhaps the first major news event captured by ordinary people using their cell phones. Changing news forever.” (Despite Wikipedia already calling it in 2004, above). “CNN executive Jonathan Klein predicts camera phone footage will be increasingly used by news organizations.”

[youtube:http://www.youtube.com/watch?v=Y3266GdfvMI%5D

 

April 29, 2006
The Hong Kong “Bus Uncle” video

“I face pressure. You face pressure. Why do you provoke me?”

It’s not only famous people and world leaders who face pressure. Every-day “normal” people, all around the world, face pressure. Whatever our differences, we are united by this common thread: We Are Human. Respect your fellow travelers.

[youtube:http://www.youtube.com/watch?v=H20dhY01Xjk%5D
January 1, 2009
Oscar Grant – police shooting at BART
I almost included this Rodney King video in the list. Since the videographer, George Holliday, used a Sony Handycam, it violated my rules. But this was 1991 – years before camera phones. In many ways, the Rodney King video set the stage for much of the citizen journalism that was to come.

Oscar Grant’s story is a good companion story. Like Rodney King, Oscar Grant was shot and killed by a police officer.

Unlike Rodney King’s story, in a chilling difference: With improvements in technology, the Oscar Grant video was easily more viral. And the officer involved was convicted.

[youtube:http://www.youtube.com/watch?v=bmJukcFzEX4%5D

 

June 13, 2009
Iranian election protests

Before Egypt, before Syria – there were the Iranian election protests. This was one of its first viral videos.
There are too many videos to list here (see Mashable’s list of 10), and many are more graphic than we can ever hope to experience, including the precedent and inestimably earth-changing recording of the death of Neda Agha-Soltan.
If you look at the footnotes at http://en.wikipedia.org/wiki/2009_Iranian_election_protests there are countless citizen-generated videos bearing witness to police gunshots into crowds. Not only did “Major news outlets, such as CNN and BBC News, gained much of their information from using and sorting through tweets by Twitter users and videos uploaded to YouTube,” but this galvanized and sparked a “Persian Awakening.”

[youtube:http://www.youtube.com/watch?v=54XQ7Vf-bVY%5D

 

January 18, 2011
Meet Asmaa Mahfouz and the vlog that Helped Spark the Revolution

I realize this may not be a hand-held camera phone, but at the very least the revolution this sparked was propelled by camera phone witnessing. “As one Egyptian activist succinctly tweeted during the protests there, ‘We use Facebook to schedule the protests, Twitter to coordinate, and YouTube to tell the world.’”
More on the story: Asmaa Mahfouz & the YouTube Video that Helped Spark the Egyptian Uprising

[youtube:https://www.youtube.com/watch?v=SgjIgMdsEuk%5D

 

November 18, 2011
Police pepper spraying and arresting students at UC Davis

Not only is this another in a series on the watchdog capability of camera phones , but to many, the incident became the iconic badge of the Occupy movement itself.

[youtube:http://www.youtube.com/watch?v=WmJmmnMkuEM%5D

 

2011-2012
People & Power : Syria: Songs of Defiance

User-generated content becomes mainstream and goes underground at the very same. This is a remarkable compilation of footage from an Al Jazeera journalist’s cell phone camera. “An unusual but compelling first-person account of a country in turmoil and a revolution in progress”

[youtube:http://www.youtube.com/watch?v=VnvPXspjLtU%5D

 

 

November 6, 2012
2012 Voting Machines Altering Votes

Never again should the validity of your voice and your vote be subject to doubt.

[youtube:http://www.youtube.com/watch?feature=player_embedded&v=QdpGd74DrBM%5D

 

Footnotes:

 

I’ve been working on this list for a long time. Above are just some of countless examples. Since I began thinking about this, there are other such lists – including an excellent compilation from linktv of Top 10 Raw Videos that Changed the World (which contains many images too rough for me to stomach) – and the 15 YouTube Videos That Changed The World (deliberately not all camera phone footage).

I’ve left out incredible historical videos of events that changed the world way before camera phones and YouTube. And clearly I’ve omitted many other notable social movements including Pussy Riot, Gangnam Style knock-offs, and “the funniest kitten you will ever see!”

Have I left out something important from your camera phone? Let me know!

Wednesday in Las Vegas: Being Online – It Shouldn’t Have To Hurt

I put together some thoughts for the informal session I’ll be holding at SAP’s technology conference, SAP TechEd, in Las Vegas next week.

These are (necessarily?) unfinished thoughts, mostly because no matter how many stories I hear (and this year with the release of It Gets Better: SAP Employees I’ve been privileged to far more than I could ever have imagined) I still don’t have an answer.  But as technologists, especially at a company that purports to help “make the world run better,” we all must be part of the mandate to find a solution.

Originally I titled this session “Being Online (as a minority)…” – but then came Marilyn Pratt’s excellent blog about the concept of bullying in our own backyards, in a business context.  Let me be clear I don’t think any of us are immune to the pain of the public flaunting of whatever are our soft spots.  Yet these spots are exactly our most precious, and our futures, collectively, are lost without them. In this sense, we are all minorities — online or off.  Our differences are what matter — I believe — for the future of the globe.

If you are in Las Vegas next week I’d love it if you could join me.  If not, I’d love to hear from you here or in person.  Also, continued thanks to @karoli, @godisdead, and many others for actively engaging with me on Twitter and beyond in these topics.  Thank you.

“It Gets Better” in Thirteen Languages — When Words (And Music) Matter

Where I work, at SAP, I’m proud to announce that we just released a multilingual version of our film It Gets Better: SAP Employees:

http://www.youtube.com/watch?hl=hi&v=Zbh4YNwmfJM

From my post on the SAP Community Network:

Together with the German subtitles we already had in place when we launched the film, that makes *13* languages in which SAP now says It Gets Better worldwide. Please watch and share with colleagues and friends in locations where these languages are spoken – especially where there are people who may be in crisis and need a supportive message.
Here are the nine originally released languages:
  • Chinese
  • English (closed-captioning for the hearing impaired)
  • French
  • German
  • Hindi
  • Italian
  • Portuguese
  • Russian
  • Spanish

Here are the four additional languages added by passionate community effort:

  • Bulgarian
  • Croatian
  • Serbian
  • Slovenian

Now that these translations are available, the full transcripts of the film are searchable in nine languages on YouTube.  Why is this a big deal?

As you may be aware, the realities around the world of what it means to be LGBT vary widely. In many places in the world it’s illegal to be gay and the penalties can be harsh. Assuming you’re in a location where you can access YouTube, if you’re a lonely teen wondering where to turn, you have one more place to find help.

For example, check out the results of a search query like this:

http://www.youtube.com/results?search_query=highschool+bullying+
miserable+throwing+eggs+gay&oq=highschool+bullying+miserable+
throwing+eggs+gay

Today, the It Gets Better: SAP Employees video shows up top-of-the-list. When you’re alone and feeling different online, words can hurt.  You can also use words to help.  So reach out if you need help – even if you have to reach around the world to do so.

PS: In honor of the multilingual release of the film, we’ve also made one more language available: Music. The artists who created the song to the film have made it available for free download online. We only ask that you share the message with those who may need help.  We are indebted to all who help spread the message that It Gets Better. Thank you.

Too Big To Fail — Todd Smith & David Powell: Blood Beyond Bayer

Todd with a TV

Young Todd with a TV

Todd in a helmet

Young Todd in a helmet (to protect his head from potentially fatal trauma)

Todd Robert Smith was my friend and my hero. He was born on May 7, 1962. He passed away peacefully last Thursday, August 9, surrounded by his beloved family, his dog Eiger, and me. I will forever be grateful for every moment I spent with Todd, and these moments are no exceptions.

We met in 1991 at Power Up Software in San Mateo, where Todd was a geeky IT person and QA manager with thick coke-bottle glasses, adorable curly hair, and a penchant for very silly hats. He was initially trapped behind a glass cage in the server room, so we developed a witty banter via what could be called early forms of text and instant messaging. Since he controlled servers, we had him to thank for nerd-humor network communications that always brought a smile to my days. Eventually I would literally fill a book with the long tangential electronic banter that flowed between us, which I preserved and later assembled and presented to him for his 40th birthday. It was my great privilege to work and play well with this brilliant and charming man.

It was at Power Up that I also met his friend and fellow legend David Gerard Powell, who worked in customer support. Both Todd and David were hemophiliacs.

A tall, dark, and dashing figure, Dahveed, as he was called, was always supportive, endlessly helpful, and inherently polite, but often with a vigilante-like swashbuckling edge. He had a wild caterwaul laugh which I can still hear in my head and which smelled like the menthol cigarettes he smoked with abandon. I knocked back several whiskeys with him in his time indeed.

Todd and Moya at the Hemophilia Ball

Todd and Moya at a Hemophilia Ball in the early 1990s

Todd and David were wickedly smart readers and researchers, strong fighters, and slightly intimidating to be around. They worked tirelessly to make life better for their fellow blood-brothers. Todd volunteered every year at an outdoor camp for hemophiliacs where they could get out and get dirty and wet in the river and the great outdoors, because he knew the value of keeping active and staying alive despite a potentially fatal blood disorder.

These two men were the first hemophiliacs I had ever known, and they gave me an impression of hemophilia far different from that of a “life of peril” of just a few decades past. But a different matter of blood would end up clouding that picture greatly.

At some point months after meeting Dahveed and Todd I remember connecting hemophilia with risk of contracting HIV and casually asking Todd about this risk.  “It is a concern,” he replied, in typically understated fashion.  It wasn’t until several months later that I learned that he in fact had been HIV- and hepatitis-C positive for quite some time, and later still till I learned more about the contaminated hemophilia blood products story.

In 1994 I helped David Powell translate his deeply researched and well written missive about the dangers of contaminated blood products, the warnings of inadequate testing of national blood supply, and the need for better regulation, quality control, and accountability.  David delivered this speech before the FDA Blood Products Advisory Committee, and wanted it translated into Japanese, German, and French to mail directly to the chairmen of the pharmaceutical companies associated with the contaminated blood products, Baxter International, Green Cross Corporation, Bayer AG, and Rhone-Poulenc Rorer.  I include the English version below so that we can finally index it and bring it into the Internet world of record.  (I apologize for any funny translations – I’m working from a record that no doubt went from English to German to French and now back to English – but I’m as faithful as possible to David’s original words.)

In 1998, in one of the most courageous acts imaginable, Todd traveled to Germany to Bayer headquarters to deliver a speech directly to chairman Manfried Schneider, in German, at Bayer’s shareholder meeting. You can read it here in English.

“Herr Schneider,” he asks, “Why has Bayer never, to this day, warned its customers that they might have been exposed to the AIDS virus through their products, or that their product was being intentionally manufactured from high-risk donors?”

Riskier products (which were contaminated) were shipped overseas under less regulated atmospheres (see also the great timeline at the end of this article), as Todd continues with Herr Schneider:

In 1985, Bayer had a virally inactivated product available in the USA. But Bayer did not withdraw the older, untreated product from the market. In fact, Bayer told its distributors of the medicine to make sure they sold the old product before the new. Why, after the FDA prohibited the sale of untreated factor medications in the United States, did Bayer transport the remaining untreated, unsafe products to developing countries such as Costa Rica – countries without such strict regulations – only to infect hundreds or thousands more?

Often sick, vulnerable, and impoverished communities of hemophiliacs bounced back and forth between years of liability cases and appeals. The pharmaceutical industry apparently wanted these issues (and the “dramatic” and “hysterical” people associated with them) to quietly just go away, while in classic “too big to fail” rulings, appeals were dismissed since the lawsuits might bankrupt the industry. Early on these same companies were protected by the very organizations deigned to protect us (the FDA): “MAY 1985 — The Food and Drug Administration realizes that companies are still selling unheated concentrate overseas. F.D.A. official wants problem ”quietly solved without alerting the Congress, the medical community and the public,” according to Cutter documents.”

These cases would plod slowly to settlement while many died, but with widely differing outcomes. Says Todd to Herr Schneider:

Around the world, Bayer has reached various, widely differing financial settlements with hemophiliacs in many countries. Japan’s government was firm, and forced a reasonable settlement including a large lump sum, annual payments and medical care for life. In my country, Bayer is paying only $100,000 for each life destroyed by its product, and no further payments or benefits of any kind – in a country without socialized medicine.
There are hundreds, like myself, who chose not to accept such a pitiful amount for the egregious actions of this company, and have legal cases pending in US courts.
Why are the human lives in Japan and America worth vastly different amounts, while hemophiliacs in some countries recieve no relief at all? Is Bayer not a multinational corporation?

It’s hard to imagine more poignant David and Goliath stories, and it’s not always easy to piece together the complete picture on behalf of all the Davids and their blood brothers (and some sisters), and all their families and friends and countless more who are touched through their lives. I can still hear David Powell quoting Todd’s questions to Herr Schneider.  Shortly after Todd’s trip to Germany, David Powell died after fighting complications of AIDS.

Todd kept fighting for years on behalf of his fellow hemo families, and it was only later that I learned about many of his efforts. He never went out of his way to talk with me about injustices, he never sat back and lamented, and although he regularly crusaded through a personal myriad of health odysseys, he simply persisted to live, not die, with various blood disorders and infections.

The biggest legacy of these cases and the work of friends like Todd Smith and David Powell is not the financial quality or lack thereof of settlement, but the discourse, education, and lasting change in blood quality control to prevent future tragedies.

I dedicate David’s letter below to the power of friendship, love, and truth in all the moments we are privileged to find them, amongst the exceptional and everyday heroes we get to call friends. These are the things in life that are indeed “too big to fail.”

Todd and Moya, hospice at UCSF, overlooking the foggy city skyline

Todd and Moya, in hospice at UCSF, overlooking the foggy San Francisco skyline. August 9, 2012

If you wish to make a donation in honor of Todd Smith, please visit his non-profit, Disabled Adventure Outfitters. Paddle on, Todd.

FROM:

David G. POWELL
321 West 42nd Avenue
San Mateo, California
94403 USA

TO:

Chairman and CEO
Rhone-Poulenc Rorer
25 Quai Paul Doumier
92408 Courbevoie
CEDEX, France

Chairman and CEO R. Vemon Loucks, Jr.
Baxter International
1 Baxter Parkway
Deerfield, IL 60015 USA

Chairman Renzo Matsushita
Green Cross Corporation
1-15-1 Imabashi / Higashi-Ku
Osaka, 541 JAPAN

Chairman Manfred Schneider
Bayer AG
Leverkusen 5090
Bayerwerk, GERMANY

Dear Chairmen and CEOs.

Please consider this document. It contains the speech I make today, December 15, 1994, before the Office of the Food and Drug Administration of USA (Food & Drug Administration. FDA), Center for Biological Evaluation and Research, Blood Products Advisory Committee.

As an American citizen, I deliver this speech before the competent authorities to inform the U.S. president, the National Congress, the Department of Health and Human Resources of the urgency of the creation of better control of quality in the blood products industry.

As businessmen, I hope you will immediately recognize the value of incorporating a complete quality review of blood products.

David G. Powell

On December 15, 1994.

Statement to the Blood Products Advisory Committee, Biological Research Office Food and Drug Administration (FDA) Rockville, Maryland.

In 1805, Dr. John C. Otto writes about families living with hemophilia around New Jersey. Dr. Otto had not yet given a name to this disease, but he was one of the first American doctors to have it recognized and accurately described.

In his last paragraph on hemophilia, he made a personal description of hemophiliacs whom he met. He described the American hemophiliac in 1805 as “remarkably healthy,” “athletic,” “of a florid countenance,” and “irascible.”

Today, before this committee, doctors, industry and the public, I offer my “irascible” commentary on blood quality and safety in the United States as a hemophiliac. I would give my opinion on behalf of my brother and all hemophiliacs I have spoken with since the Creutzfeld-Jacob syndrome (CJD) was discovered a month ago.

I listened to a hemophiliac who helped his company win the Malcolm Baldrige National Award for quality before he retired himself having contracted HIV.

I listened to a hemophiliac in poverty who has access to products from the American Red Cross.  This hemophiliac has been exposed to Creutzfeld-Jacob syndrome through a contaminated batch of blood product which was later withdrawn from circulation without him being notified. This patient, like many others in the U.S., just received a new prescription permitting him to use non-contaminated blood at the center of blood transfusions for hemophiliacs.

No effort was made to prevent patients from using contaminated supply, or to recall contaminated products already distributed. These products are listed according to the U.S. federal code as “minimum reserve to keep in case of emergency or unforeseen circumstances.”

It is so scary to contemplate the number of contaminated products that are being recalled. There are countless reports about products that were withdrawn from the market because of contamination without the users being warned, and even without organizations attempting to recall them.

National centers for the treatment of hemophilia, pharmacies and private hospitals are saying they must first be contacted by the producers, or they do not have sufficient information. We are not experts in extracting plasma, yet we know that albumin, prolastin and various blood products result from the same process.

When the decision to withdraw a product from distribution is made, a group of consumer organizations starts by calling for the defense of local hemophiliacs, drug users and blood. The National Hemophilia Foundation, under new management, with little silver does its best to warn officials at the grassroots of our movement. Then our leaders must use their own funds to try to prevent harm to patients and families. Moreover, these funds are normally intended for the prevention of AIDS.

We will never have as much contact with hemophilia in the past or future as we did in 1982. Few users of the blood supply are now living, or they use a low quality product that was very widespread here for several years. Hemophiliacs today are physically disabled, mentally shattered, tired of this shameful charade. Hemophiliacs now think that plasma collection, processing and distribution will never change. Hemophiliacs, without anyone to protect them and with little ability to protect themselves, have lost all hope of the role of the Office of the Food and Drug Administration (FDA).

Again and again I see the widespread devastation caused by a pharmaceutical industry that refuses to consider its most destitute consumers. Unfortunately, the social and financial status of different patients does not influence the prevention or destruction of contaminated blood products. We are all equal in the biological warfare trenches. By this, I do not lack respect for the medical profession, or for experts who examine the blood products and who fight every day with us for better quality products. They all want the best services we can offer. But the actual prevention of distribution and recovery of contaminated products is still very random, and cannot under any circumstances be considered reliable.

Today, I question the quality of services and support received by American hemophiliacs who buy and administer products that are even more expensive than the pharmaceutical industry has to offer. This industry was greatly surprised at the discontent of hemophiliacs when it only publicly announced the existence of Creutzfeld-Jacob syndrome in blood products currently on sale several weeks after its discovery. It is true that a few years earlier, a regular blood donor dying from a debilitating illness would not have attracted the attention of the FDA. It is also common to hear a representative of the FDA declaring that “no one currently uses the products of the Red Cross, and only a limited number – if that – of Dutch hemophiliacs and French were exposed to the virus.” It’s not just that hemophiliacs are calling into question the competence of our authorities in prevention and how quickly they act to remove contaminated products from the market. It is partly also what hemophiliacs in the United States have learned in recent weeks that the pharmaceutical industry itself has not manifested.

I have read and heard comments from hemophiliacs across the nation about the threat this new virus brings to our community. Hemophiliacs all send me a clear message: “A virus that can destroy our nervous system by attacking the brain is not desirable. We already have our share of disasters in our medical community and the idea of this new virus is a great threat, especially when Creutzfeld-Jacob syndrome frightens even pathologists themselves.”

I speak today as one hemophiliac unrelated and unaffiliated with industry and organizations that produce blood products. I speak today as an individual gravely concerned for his community and his nation.

American hemophiliacs today are not remarkably healthy, as Dr. Otto liked to describe them in 1805. No, the American hemophiliacs today as elsewhere in the world have suffered and still suffer the decisions made by the pharmaceutical industry. As we all know now, the AIDS virus, viral hepatitis and many other blood diseases are relatively recent due to the modern miracle of vaccination, blood transfusion, blood banks and plasma fractionation.

The number of hemophiliacs infected with the AIDS virus between 1982 and 1986 is a recent example of irresponsibility on the part of our officials and pharmaceutical industries. In fact, the general rule was that the doctors’ oath of “do no evil” has been violated. Today, in 1994, it is impossible to count the number of hemophiliacs who have died of the fatal injury of the AIDS virus in the United States.

Statistics show 3500 dead. We also know that between 1983 and 1989 the longevity of life of hemophiliacs fell twenty years. Modern medicine has never taken such a step backwards. We have learned that 90% of hemophiliacs using coagulants (Factor VIII) have contracted the AIDS virus.

The tragedy of American hemophiliacs is fairly well described by thousands of notes prepared by the Institute of Medicine, the National Science Academy, after an investigation on the transmission of the AIDS virus. A complete file from the Institute of Medicine is due in 1995.

A bill will be proposed next year before the United States Senate on workers compensation management of American hemophiliacs. A trial will also be launched in Chicago against the pharmaceutical industry. Compensation and legal penalties are now estimated at over 2 million French francs.

The director of a blood transfusion center of a large American city announced at a council with representatives from the Department of Health that “600 million francs reserved for testing blood for hepatitis B proved too expensive.” The pharmaceutical industry supported his opinion, and as yet to test for the AIDS virus, to be thrifty, no money was spent.

Today, 600 million francs seems like a joke compared with the price of blood reserves of an entire nation.

So as a hemophiliac and a businessman, I try to comprehend the quality control strategy of the pharmaceutical industry. Is it really necessary to bring the industry to court for considerable sums to obtain a better quality of blood products? Is more money for compensation the right solution? Does the pharmaceutical industry not realize that to ignore its consumers and not to improve its products will eventually cost it much more in the long term? A company earns the trust of its shareholders and its customers with the quality of its products and services.

There are obviously synthesized products, the products obtained by cloning of blood cells for those who can afford the expense. But it is the company that will inject the idea of quality from the first donation of blood. A company that will rise to worldwide ranks for its quality products. A company that actually works with governments, institutions, people and medical clients on an international level, which will collect blood, and transform the distribution of quality products.

A company that can win the Malcolm Baldrige National Quality Award.

I speak neither of laws or regulations by which the industry has been governed since 1902, nor for any changing or adding text. I do not speak either of the regulation of quality standards, which is partly insurance for good quality products. I’m talking about comprehensive quality control, which you have perhaps heard referred to as “the global organization for quality assurance” (Worldwide Organization of Quality Assurance), or as “comprehensive quality control” (Total Quality Management. TQM). The pharmaceutical industry has not taken into account the threat to hemophiliacs and did not act according to overall quality control standards. Only recently has the industry, under pressure from the FDA and experts, finally found the need to push for a better quality assurance in blood transfusion centers. It is certainly not yet overall total quality control, but it’s a beginning, 90 years after the first law on organic products was passed.

Quality of blood is the order of the day in 1955, 1969, 1974, 1982, 1983 and now 1994 with Creutzfeldt-Jakob syndrome. During all these years, even before the first tests were performed with the human liver in 1955, the quality of blood was still on the agenda.

At the conference today, we learn that the Creutzfeld-Jacob syndrome transmits through cellular tissue, not by blood transfusion. This is new to our general knowledge: the prion. We hear that no patient has contracted the syndrome by blood transfusion, it is a rare disease and only 250 cases were reported annually in the United States. We’ll hear variations on models not including any risks and other theories from medical experts about a prion protein. We hear the debate on the efficiency of alternative tests and the various scenarios that result, and the new plans in force to study donors and users. We will certainly hear about frightened and confused donors who then refuse to give blood. We hear talk about maybe how much it will cost the industry if it were to fund medical research in the private sector, donor education, breeding programs and alternative tests for blood.

The real problems today are the decisions for quality and, on a larger scale, the choices that our society must take. It’s a choice we all make as citizens, and you can help as the Blood Products Advisory Committee to the FDA. The right choice today is to request a full commitment to quality from industry, medicine and government.

This is the choice that I offer today. We need national guidelines and the will to improve the quality of blood so that all Americans can benefit. This committee should advise Mr. Kessler, the FDA commissioner, to propose to the President of the United States and the United States Congress rapid deployment teams for quality in our nation. We must incite national attention on new guidelines for quality, for donation centers, for all users of blood products.

Blood is a topic of conversation for millions of Americans every day. We need a national agenda to educate Americans of the benefits of blood and the important role it plays in everyday life. There are other elements in the blood besides cholesterol, and the public needs more information so that everyone can enjoy the best system ever imagined for blood collection, donors, and users. We must lift the veil that covers the industry since it began marketing the plasma separation in 1974, a veil that separated us from the social contract for quality and in favor of profit.

I ask this committee to show Mr. Kessler, the FDA commissioner, the urgent need to establish new national guidelines and the commitment necessary to enable the implementation of these guidelines. What consumers want is the mandate given to the FDA, and this is once again what consumers intend to recover. It is the inalienable right of every American, and requires the participation of each of them, in every way possible to succeed.

I also suggest to this committee that you involve the users of blood products in your arsenal for regulatory inspections and audits. Work across the nation with local representatives of the American Society for Quality Control (ASQC) that offer courses certified by the state on regulations to comply with the FDA. I personally know many hemophiliacs and their families infected and affected who are interested in participating in these courses. They themselves could play their role as approved representatives of the FDA, as indicated by the code of federal regulations. In these days of fiscal responsibility and great risks, it is necessary that FDA officials organize unannounced inspections in blood transfusion centers nationally.

I ask that this committee be established to prevent a system for users of blood products. A free telephone line would be open in time to inform users of expired products and recall. I also request that an investigation be conducted immediately by representatives of the FDA on methods of procedure to recover the products contaminated with the Creutzfeldt-Jakob syndrome.

Members of the Blood Products Advisory Committee are also the watchdogs of the national blood supply; you share this in common with hemophiliacs. Thank you for listening to my irascible speech, and for the benefit of the entire nation, I hope you act quickly and accordingly in the interest of all Americans.

Cyberbullying: When social media hurts. Making it help.

Inside my workplace at SAP, we’ve got a vibrant intranet.  I was asked recently to contribute a story to a “Social Media Experiences” collection, and below is what I wrote today, which I also wanted to share on the extranet.

I also want to hat-tip @Karoli, with whom I’ve been having a vibrant conversation on Twitter about what we could do to help prevent online bullying among other things.  She’s got smart ideas around identity and authenticity online.  Being anonymous online can be incredibly liberating, but it also makes it easy to say incredibly mean things to people that you would not otherwise have said to their faces. We must work to prevent yet more cyberbullying that leads to suicide — and owning what we do and say would help.  As Karoli said: “It all goes to having some kind of reliable identity system. Not necessarily a real name, but a verified identity.”

Please let me know if you know of people working in this area.  I’d love to collaborate.

About Me: Being Out at Home and Work

I married my wife Leanne legally in 2008 in California. Shortly thereafter, California banned same-sex marriages.  We’re in a legal netherworld and are federal strangers, as long as the Defense of Marriage Act exists. I’ve been working at SAP for over 10 years, but only within the last couple of years have I been actively involved in our local LGBT community. One of our most recent and successful initiatives – and nothing short of a career highlight for me – has been to release the It Gets Better: SAP Employees film to great support and success.

Social Media Usage Scenario: It Gets Better

There are many ways LGBT (lesbian, gay, bisexual, and transgender) people are helped by being able to be themselves and connect online on Facebook, Twitter, YouTube, formspring, blogging, and beyond.  There are also many ways it hurts – often tragically.  According to this recent infographic from The Advocate:

  • 7.5 million Facebook users are under the age of 13 (despite the minimum age requirement being 13)
  • 800,000 kids report being bullied on Facebook
  • Bullied kids are twice as likely to commit suicide as non-bullied kids
  • 1 in 5 cyberbullied teens think about suicide
  • 1 in 10 attempt it
  • 4,500 teens succeed in killing themselves every year

The It Gets Better Project, founded in September 2010, is a collection of over 50,000 videos submitted by individuals, celebrities, employees, and organizations in response to an increase in suicides of LGBT teens or those perceived to be gay or different. The goal of the videos is to counter bullying influences by telling personal stories about how life gets better – to offer hope by speaking directly to people at-risk of suicide.

I managed the making of SAP’s It Gets Better film, which we released on June 7. During this process, we discovered that SAP colleague Steve Fehr had recently lost his own son Jeffrey to suicide after years of anti-gay bullying.  Jeff was 18 years old.

Making the film was a profoundly transformative process for all of us.  Please watch and share here:

The effort involved in making this film was huge – over 100 people from around the company came together to create and support the release of this film, many being interviewed and sharing highly personal stories in service of making it better.

The Impact: Preventing Further Tragedies

As Steve Fehr said shortly after I met him: “I will do anything I can to prevent just one person from suffering what Jeff suffered and one family feeling the agony that we feel.” At the end of It Gets Better films, there is a phone number for The Trevor Project you can call if you are in trouble and need help.  Had Jeff known about The Trevor Project, Steve asks himself, would he still be here?  Steve and his family are not prepared to stop asking that question until they’ve done everything they can to spread the word that help is out there.

SAP’s It Gets Better film has been seen as of this writing nearly 23,000 times, making it the second-most viewed video on SAP’s YouTube channel in just over one month.  Publishing this film, and achieving the reach we have, would not have been possible without social media and all of us eager colleagues and supportive friends who helped spread the message (Cathy Brooks’ Huffington Post piece currently accounts for the highest percentage of referrals to YouTube).  The challenge is to take some of the very same channels and environments responsible for some of the staggering statistics above and turn the tables.

The It Gets Better Project shows how hard work every day in social media channels themselves can bring balance to the cyberbulling.  And the films can come from individuals as well as organizations.  This comes from all of us, and comes down to all of us, to make a difference every day and speak up where we see bullying happen, online or off.  As individuals.

 

PS: The night we released the film at SAP, we had a great panel of anti-bullying experts present.  Watch highlights from the post-event interview reel here:  http://ireport.cnn.com/docs/DOC-810994

Be the one that helps: SAP Employees Release “It Gets Better” Film

From the SAP Community Network today:

What do we live for, if it is not to make life less difficult for each other?
-George Eliot

SAP employees release our It Gets Better film today in support of LGBT youth in crisis. As we do, we reflect on what makes a community, who belongs to it, and how communities can hurt – and how communities can help.

I am proud to be an SAP employee today as we release our own It Gets Better film. I’m also humbled, regretful that we didn’t make this by December 31, 2011, and vulnerable. I will explain.

The It Gets Better Project, founded in September 2010, is a collection of over 50,000 videos submitted by individuals, celebrities, employees, and organizations in response to a number of suicides of lesbian, gay, bisexual, and transgender (LGBT) teens or those perceived to be gay or different. The goal of the videos is to counter bullying influences by telling personal stories about how life gets better – to offer hope by speaking directly to people at-risk of suicide. In the video, I join my incredible colleagues with my heart on my sleeve. But I was absolutely compelled to help fellow colleagues make this happen, even more so after I learned about Jeffrey Fehr.

On January 1, 2012, 18-year-old Jeffrey Fehr of Granite Bay near Sacramento made the devastating decision that he could no longer go on living and took his own life. He had recently graduated from Granite Bay High School where he was a pioneer as the first male cheerleader. He was well loved by his friends and his family, and was a bright light and inspiration for countless peers. He was also an out gay youth who had endured years of teasing and bullying.

In the words of his father, SAP employee Steve Fehr:

Jeff chose a permanent solution to a temporary problem not realizing the pain, heartache and agony he was leaving behind. Please do not do that to the ones who love you the most. Please reach out for help now to the many resources available.

On January 2, Graph Desino, schoolmate of Jeff’s at Granite Bay High School, posted on the blog Graph’s Crap:

When I was a freshman, I wrote a Gazette article about Formspring and its uses/abuses. It was pretty dull stuff, truth be told. But somehow, while I was fiddling with my own Formspring account, I stumbled upon Jeff’s. … I don’t remember any specifics, but the hate and anger thrown at this kid, holy shit.
[Jeff’s] Formspring archive remains etched in my mind for a reason. I’d always felt very uncomfortable here, with my bisexuality, and all those knowing glances, but I thank God I never had to deal with what he did. It was unrelenting. Often obscene. Always anonymous.

But he replied to them without animosity. That was the really incredible part.

We can’t see Jeff’s Formspring account anymore but we can imagine what sort of stuff that was that he had to deal with. In a Granite Bay Gazette article from November 2010, shortly after the It Gets Better project’s inception. Schoolmate jcologna writes stories from close to home about how gay students are impacted by bullying. Teacher Katrina Wachs says in the article:

“Since I came to this school I have been shocked by how many times a day I hear ‘that’s gay,’ ‘fag’ and a myriad of other slogans and verbal slurs,” GBHS teacher Katrina Wachs said. “I think it’s a real human rights issue.”

The author goes on to talk about others struggling with bullying:

“It’s gotten pretty overboard, I got hit in the face last year,” the anonymous junior girl said. “I have had people go on Myspace and post ‘yes on prop 8’ on all of my pictures and I have gotten texts like ‘oh you’re a stupid lesbian you probably have aids’ and just stuff like that.”

Jeff Fehr himself is quoted in the article. And the junior girl who is bullied remains nameless, but we know there have been other teen suicides. She concludes: “I feel like maybe if it was talked about more in class then maybe it would be less of a problem.”

So we’re talking about it.

In making and releasing this film I had countless conversations with SAP colleagues and beyond that I shall never forget. Many of these conversations necessarily, given the track record of sustained bullying and cyberbullying as we’ve sadly grown to see above, revolved around how to react if people are going to say bad things. Many of the conversations however have been nothing short of inspirational, and these sustain me.

Recently I was asked something by one of our beloved community advocates right here on the SCN that I shall also never forget. The project resonated with her and she wondered whether, if she wrote about it, it would be inappropriate to talk about suicide and bullying in general and not specifically LGBT suicide and bullying.

And I answered about how she should absolutely do so — that she should apply the message in whatever direction speaks her truth.

Because what is a community? The LGBT community may all-too-accurately point out that suicides within our community are markedly particular — the fact is, in U.S. surveys, lesbian, gay, and bisexual adolescents and adults have two to six times higher rates of reported suicide attempts compared to comparable straight people. Among transgender people the rates of suicide attempts are markedly high but not well measured.

And yet LGBT people are our communities; and our communities at SAP and on the SCN represent diversity at its finest — we represent.

Communities are the sum of their people. And companies are the sum of their employees. And SAP helps companies run better. This film is about being better to each other, valuing differences – being the best people we can be.

Communities can hurt – and communities can help. Watch, share, talk, and help us be the kind that helps.

Tonight in Palo Alto we premiere the It Gets Better: SAP Employees film to a live audience in Cafe 1 at 5:30pm, where we welcome Granite Bay High School teacher Katrina Wachs to participate on a panel to talk about what is going on here. We also welcome local Gunn High School teacher Daisy Renazco and prominent LGBT suicide prevention organization Trevor Project CEO Abbe Land, as well as Seth Levy from the It Gets Better project.

If you are in town, please join us at 5:30 tonight. If you are not, please watch the film and share widely. Help us help even one person realize that they are not alone. My deep thanks.