AFRICA EXCLUSIVE: New York School Teacher Becomes International Humanitarian

Barbaro Margolies and Rwanda genocide survivor

Barbara Margolies, an author and former school teacher from New York City, is changing lives in Africa, and even saving them. As founder and executive director of the International Organization for Women & Development (IOWD), she's helped thousands of African women living with fistula, a devastating childbirth injury that afflicts hundreds of thousands of African women and can result in the chronic leaking of bodily fluids, among other serious health problems. 

When she first learned of this problem, which plagues much of the African continent, Barbara says she just had to do what she could to help. So in 2003 she started IOWD. As a result of her work in Niger, Barbara was recognized by that nation's president with the highest award given to a foreigner, the medal of honor. Here's a video of IOWD's work in Niger, where Barbara stayed for seven years before being forced to leave because of political upheaval and an eventual coup. 

The American Ambassador to Rwanda, Stuart Symington, knew of Barbara's work in Niger, and invited her to come to Kigali, Rwanda, which has allowed Barbara to expand the IOWD program for more specific teaching to the medical staff in many hospitals. 

In 2010, she brought her big heart to Rwanda, a country almost completely destroyed by Genocide in 1994. In an exclusive interview with The Reno Dispatch, Barbara says that when she stepped off the plane, she saw flowers blooming everywhere. 

"There were clean streets, beautiful people, new buildings rising up into the sky, the air was pure and cool," she says. "I could feel the vibrancy. Rwanda would become our second home. I knew it."

Barbara has been to Kigali 11 times since 2010. "Kibagabaga Hospital is where we receive women who are leaking urine or feces due to difficult, unattended labor or complications from C-sections," she explains. "They come from all over the country, poor women, desperate for help, ostracized because they constantly smell as urine soils their clothing and drips down their legs."  

IOWD doctors and nurses spend long hours in the operating rooms to repair as many women as possible. It’s worth every minute to see a woman smile, Barbara says, knowing she is dry and can return to her family and a normal life. 

"We travel to Rwanda for two weeks, three times a year," she explains. "We are teaching Rwandan doctors skills so that they will be able to do these surgeries independently; we teach them how to perform proper Cesarean deliveries to prevent fistulas; our outreach educational program advises women how to take better care of themselves during pregnancy, while suggesting they deliver in health centers or at a hospital, and not at home, where complications might occur." 

IOWD is building a sustainable program for the prevention and repair of existing fistula cases, and hoping that in the future, they will no longer be needed.

"There is tremendous joy and accomplishment knowing that we have, in some small way, provided help for those who have suffered for so long," Barbara says. "When you step inside the hospital tents, the overwhelming smell of urine doesn’t matter because the women begin to sing, welcoming us. I dance with them, as they praise God that help has come."

Barbara met a 57-year-old patient who was raped during the genocide, and her husband and two of her children were killed. She had been leaking urine for 17 years. Now, because of IOWD's doctors, she was dry. 

"She hugged me and kept saying 'thank you'," Barbara recalls. "Her dignity was restored. She touched my heart, my soul. We leave for Rwanda in a few weeks. I can’t wait to get back."

EXCLUSIVE: Creator of Lifesaving Cancer Therapy Comments on Drug Company's Decision to Kill It

Dr. Mark Kaminski, who developed Bexxar

Yesterday I broke the news here that GlaxoSmithKline (GSK), the international, multi-billion dollar drug company, has shockingly decided to stop making Bexxar, a remarkably effective, safe, FDA-approved drug for non-Hodgkin's lymphoma cancer. Bexxar saved my life in a clinical trial 14 years ago, and has saved the lives of so many others. 

In the 24 hours since my story ran, the response has been overwhelming and decisive. Patients and their loved ones are decrying GSK's decision to scrap this therapy, which studies have shown works better to eradicate follicular non-Hodgkin's lymphoma - the most common type of lymphoma - than any other treatment, including chemotherapy and/or Rituxan. And with fewer side effects.

I just heard from Dr. Mark Kaminski, the respected hematologist and researcher who co-developed Bexxar at the University of Michigan. Not surprisingly, he is very disappointed with GSK's decision. 

"Thousands of patients have been treated with Bexxar and many of them are alive today because of this treatment," Kaminski says. "My heart goes out to the patients with lymphoma, both currently diagnosed and future patients. It’s a crying shame."

In a statement, GSK says the decision to discontinue Bexxar "involved a thoughtful and careful evaluation of patient needs and the clinical use of the therapy. The use of Bexxar has been extremely limited and is projected to continue to decline. Additionally, there are other treatment options available for patients with relapsed non-Hodgkin’s lymphoma."

But as I have noted, the other options are not as effective. Bexxar and its competitor, Zevalin, both give non-Hodgkin's lymphoma patients longer remissions than any other available treatment, including the so-called standard of care: chemotherapy and/or Rituxan. 

Bexxar is more effective and less toxic than the treatments that are still being used in far greater numbers. But it will soon be gone. Does this make any sense to you? 

Yes, yes, I understand this was a business decision for GSK. But I believe it is an untenable and shameful one. How can we let a company get away with unceremoniously dumping a treatment that is FDA approved, saves lives, and has minimal side effects? 

Given the fact that this drug works so well for a very common type of cancer, should there not be some sort of FAA statute in place that requires a company that has purchased the drug to put forth its best effort to keep this product afloat?

Are oncologists nationwide also to blame for not telling their patients about Bexxar? Yes. Absolutely. There has been a great reluctance in the mainstream medical establishment to embrace Bexxar, largely because doctors are more comfortable with the familiar - and because doctors sometimes lose money on Bexxar if their patients have to go elsewhere to do this specialized treatment.

But it is GSK's charge to market this product, to reach out to the patient community as well as the oncology community and make sure this treatment is given every chance to succeed. GSK didn't even come close to doing that.

Everyone who has contacted me over the last 24 hours wants to know what they can do to stop this from happening. What can we all do to convince GSK to be a good corporate citizen and save this drug? The two most obvious things you can do are 1) Contact your oncologist and 2) Contact GSK at 888-825-5249. 

I'm not an activist, I'm a journalist, cancer patient and patient advocate. But I will not let Bexxar die quietly.

BREAKING NEWS EXCLUSIVE: Lifesaving Cancer Drug Scrapped by GlaxoSmithKline

I've just received some sad and shocking news: The cancer drug that saved my life14 years ago and has saved the lives of so many other cancer patients is about to be discontinued. A spokesperson for GlaxoSmithKline (GSK), the international pharmaceutical company, sent me a note today informing me that the the company will halt the manufacture and sale of Bexxar on Feb. 20, 2014. 

Bexxar is a so-called radio-immunotherapy (RIT) that is currently approved for the treatment of certain types of non-Hodgkin’s lymphoma, including the most common type, follicular. I was treated with Bexxar in a clinical trial in April, 1999 and have not been treated for my cancer since - though I did fall out of remission recently and am currently mulling over my treatment options. 

Simply put, Bexxar saved my life, and has saved the lives of many of my fellow cancer patients, some of whom are profiled in my book "Hope Begins in the Dark: 40 Lymphoma Survivors Share Their Exclusive Life Stories."

The company says it was announcing its decision now "to give treatment centers in the U.S. and Canada currently offering Bexxar adequate time to consider and, if appropriate, transition to other therapies."

Gee, how thoughtful of them. The note also disingenuously suggests that the decision to discontinue Bexxar "involved a thoughtful and careful evaluation of patient needs and the clinical use of the therapy. The use of Bexxar has been extremely limited and is projected to continue to decline. Additionally, there are other treatment options available for patients with relapsed non-Hodgkin’s lymphoma."

But studies have shown that RIT – both Bexxar and its competitor, Zevalin - have given non-Hodgkin's lymphoma patients longer remissions than any other available treatment, including the so-called standard of care: chemotherapy plus Rituxan. Yes, Bexxar is evidently more effective and less toxic than the treatment that is still being used in far greater numbers.

Dr. Mark Kaminski, developer of Bexxar

Bexxar, which was developed by Mark Kaminski, a kind and brilliant hematologist and researcher at the University of Michigan, was simply never given a chance to succeed for a variety of reasons that have nothing to do with how effective it is. 

Bernadette King, a GSK spokesperson, told me today that GSK considered a "range of options" in an attempt to continue to make Bexxar available for patients. But after a "substantial and considered review, the company reached the decision to discontinue the manufacture and sale of the product," she says.

"However, in keeping with GSK’s focus on transparency and collaboration, GSK plans to make available, for legitimate research purposes, the cell line that secretes the anti-CD20 antibody used to make Bexxar," King adds. "Access to the cell line will require that the user first enter a material transfer and other appropriate agreements. Because GSK will provide such access to the cell line, GSK does not plan to replenish antibody supply."

King concluded, "As you know, Bexxar is a therapy that involves very complicated manufacturing and supply chain processes. The cell line is but one component of the product. It is used to produce the antibody for that product. It would be the responsibility of the user to assess the utility of the cell line in the manufacture of a biosimilar in any country, or for research or other purposes, and to obtain any licenses required for any contemplated use, e.g.intellectual property or regulatory licenses."

Is this supposed to make those of us who support RIT feel better about GSK's untenable decision to sack this drug? There are years and years of research dedicated to Bexxar, a highly effective therapy that offers an easy and quick treatment time of about one week. It's very well tolerated and for most people causes few side effects. I had virtually none, other than some tiredness and temporarily low blood counts.

Bexxar often results in very long remissions. I know several people who have been treated with Bexxar who are still in remission more than a decade later. It gave me an almost miraculous 13-plus years of remission. Whereas the chemotherapy I did in 1997 gave me less than two years. Pretty simple math, yes?

But since its approval 13 years ago, it seems no one has known how to market this treatment. RIT has been used by fewer than ten percent of patients who might benefit from it. It's a tragedy, the slow but sure demise of this drug. It clearly has more to do with money, and doctors’ refusal to embrace something new, and drug companies’ refusal to fight for this drug, than with saving lives. 

Thankfully, Zevalin, which is manufactured by Spectrum Pharmaceuticals, is still available. But one must wonder now about Zevalin's future, too.

Over the next six months, GSK says it will continue to provide support services for patients and treatment centers. Physicians and patients with questions can call the GSK Response Center (GRC) at 888-825-5249.

At the bottom of its announcement today, GSK ended with the most offensive line: "GSK’s commitment to the oncology community will continue through our efforts to develop and deliver other therapies to help address the unmet needs of patients living with cancer."

Commitment? Are you kidding? This multi-billion dollar company never did nearly enough to support or promote Bexxar. I tried on an almost daily basis over the past decade to spread the word about this amazing treatment. The drug company simply gave up on it. Shame on GSK.

Over the last decade, RIT has been the subject of considerable media attention. Publications ranging from my longtime employer, Newsweek, to the New York Times have reported the fact that this therapy has never been utilized as much as it should by lymphoma patients for reasons that have nothing to do with its efficacy. 

There are all sorts of issues ranging from inequitable Medicare reimbursement rates to unfounded fears by patients and even some doctors that this treatment is dangerous and problematic because of the radiation component.

There are numerous false notions about RIT, and unfortunately neither GSK nor the nation's oncologists have done enough to dispel them. For example, contrary to popular belief, there is no evidence that Bexxar increases the risk of secondary concerns any more than chemo. 

It's also not true, despite what some say, that there is too little data to make an informed decision about using RIT. An enormous amount of data has in fact been collected in the nearly two decades since trials for RIT began in 1990. 

In short, Bexxar saved my life, and saved the lives of many others. It is nothing less than a tragedy that it is being shelved. 

Mad as Hell: Baseball Must Adopt Zero Tolerance Policy For Cheaters

Chronic cheater Alex Rodriguez

The reputation of Major League Baseball suffered another punishing beanball this week with the news of the Biogenesis scandal and suspension of several high-profile players, including New York Yankees superstar Alex Rodriguez, for taking banned performance-enhancing drugs. 

Some of my fellow lifelong baseball fans are mad as hell. "I love the game, but this is kind of the last straw for me," says David Popp, a friend and Los Angeles Dodgers fan who is just fed up. "I knew it was coming, but to hear it all explained in detail and watch that weasel A-Rod (Rodriguez) talk about how he still wants to be a role model for his kids, it's just sickening. He promised everyone he was clean. We all thought baseball was finally cleaning up its act. These guys, some of them, at least, are still cheaters and liars. They all need to be kicked out of the game, forever."

David's words resonate. And they instantly take me back to 1998, when I covered the infamous home run race between Mark McGwire and Sammy Sosa for People magazine. It was exciting for the public, but every sportswriter who covered baseball back then told me that both players were juiced. 

I didn't want to believe it - until I actually interviewed these two guys and looked at their neck muscles and forearms. They were freaks. It was disillusioning for me. I had played the game since I was eight years and at that point still put the players on a pedestal.

Seeing McGwire's pathetic confession more than a decade later just reminded me how much damage he, Sosa, Barry Bonds, Roger Clemens and others have done to this great game. McGwire told AP in 2010 that he used steroids on and off for nearly a decade! He also insisted that "baseball is really different now. It's been cleaned up. The commissioner and the players' association implemented testing and they cracked down, and I'm glad they did."

Cleaned things up? Really? These latest suspensions are hard evidence to the contrary. Guys are still cheating. And perhaps they always will. It's hard to trust these players now. When you see them run out on the field, you can't help but wonder who is and isn't playing by the rules.

Ken Wisnefski, reputation management expert and founder/CEO of WebiMax, a leading Internet marketing company, says the league "needs to do more to uphold its reputation as America’s favorite pastime."

Wisnefski notes that continued events involving athletes abusing drug policies "will hurt the game and put the future of the sport in jeopardy. Children and youth who look up to these professional athletes as role models are the future of the sport. These athletes are putting a negative label on professional baseball, and this can ultimately steer them to choosing alternate sports to embrace."

Wisnefski adds that MLB Commissioner Bud Selig could have made a louder impact by "placing a lifetime ban on Rodriguez. That would have sent the strongest message to current and future athletes."

I couldn't agree more. It's high time for zero tolerance. I will always love baseball and am not yet willing to boycott the game. But the league needs to step up and say, flatly, "You cheat? You're out!"

UPDATE: No Murder Charges Filed in the Case of Missing American Aubrey Sacco

Missing American Aubrey Sacco An update today from Nepal on a story I've been following for two years: Contrary to what a number of media reports suggested last week, lack of enough evidence has prevented police from filing murder charges against the three people identified as suspects in the alleged murder of American woman Aubrey Sacco, who went missing in 2010. Nepal's Central Investigation Bureau (CIB) arrested the three suspects Friday in connection with the possible murder of Aubrey, an athlete, scholar and musician who as I reported for ESPN had gone missing from the Langtang area of the Rasuwa district of Nepal more than three years ago.  According to a CIB official, a preliminary investigation did not find any involvement of the three accused in the possible murder. So on Sunday the CIB charging them with misbehaving and using abusive language against the police, under the Public Offence Act.  The District Administration Office Kathmandu has remanded them to police custody for seven days.  “We have not arrived at a conclusion yet and the investigation is still under way,” DIG Prakash Aryal, chief of CIB reportedly said.  A Nepal police spokesperson said that although police are still questioning these men, they do not seem to be connected with the case.  Aubrey's mother, Connie Sacco, concludes that "there is no proof" these men murdered Aubrey. Meanwhile, Connie and the rest of the Sacco family, as well as and many loved ones and friends, continue to search for answers and remain hopeful that Aubrey will be found alive.  In April Aubrey's family announced a prize of $25,000 to anyone who could provide information on their daughter´s whereabouts.

We Gather Together Today to Praise the Typewriter

The New York Times ran a nice piece over the weekend by Tom Hanks about his enduring affection for the typewriter. The acclaimed 57-year-old actor and traditionalist apparently still uses one, every day. It's hard to believe that anyone still hammers away on a typewriter in this age of computers and texting. But it's comforting somehow. 

When I began my writing career in the 1980s, personal computers were already available. But I was a holdout. I stubbornly stuck with my IBM Selectric. Yes, you had to plug it in to make it work, but it was a typewriter nonetheless. 

The trusty IBM Selectric

Before I knew what a modem was, I regularly filed - that is, faxed – stories to such publications as the New York Times, Los Angles Times Syndicate, Premiere, TV Guide and Sports Illustrated. And I wrote all of these stories on that trusty IBM. 

Eventually, I acquiesced. You can't out swim a tidal wave. But it wasn't easy. I'm no technophobe, but I felt a pang of sadness on that day when I purchased a computer, got an email account, and put my typewriter on the shelf. I still have that typewriter here in my office, if only for nostalgia's sake. I'll never throw it away.

I'm sure many people reading this, especially those of you who reside somewhere north of 50, share my passion for the typewriter, specifically the classic Underwood. As you may have noticed, I pay homage to the typewriter on this blog's header above. There's a bittersweet mystique surrounding the Underwood, which was the first widely successful modern typewriter. 

Jack Kerouac typing away

Historians say Beat Generation writer Jack Kerouac, who was one of the fastest typists among writers – approaching 120 wpm – typed his classic novel On the Road on an Underwood owned by Neal and Carolyn Cassidy in three weeks while living in Cassidys’ house.

Other notables who used an Underwood include Ernest Hemingway, John F. Kennedy, Tom Wolfe, Damon Runyon, James Thurber, E.B. White, Sinclair Lewis, Raymond Chandler, Upton Sinclair, Carson McCullers, Carl Sandburg and Paddy Chayefsky.  

Curiously, Hanks and his fellow boomers aren't the only ones who still use the antiquated device. The typewriter is making a comeback of sorts. Just as we are seeing the resurgence of vinyl records, there is now something called the "typosphere," a new term for bloggers who collect and use typewriters. 

Writer Rita Savard points out out that regularly scheduled type-ins give these bloggers a place to trade in their laptops for "rickety black boxes." 

It may only be a fad. But I think young people are beginning to understand the appeal of and indeed the deeper physical connection writers of days past had with the "machines" they used to communicate. Yes, the almost addicting physicality of using a typewriter. 

Kerouac, for example, who was an exceptional athlete, loved typing. For him, it was a physical, even athletic event. You just can't say that about thumb texting.

EXCLUSIVE: Media Gets Facts Wrong in its Coverage of Missing American Aubrey Sacco

Aubrey Sacco - Courtesy of The Sacco Family

The heart-wrenching story of Aubrey Sacco, who's known as "Glitter Girl" because she loves glitter and because of her shining personality, has touched the lives of thousands across the globe. As I reported nearly two years ago for ESPN, Aubrey, an accomplished athlete, scholar and musician, went missing in 2010 while hiking in the remote western tip of Nepal's Langtang National Park. She was 23 at the time. 

Ever since, her younger brother, Morgan Sacco, an honors student and star midfielder on San Diego State University's soccer team, and the rest of the Sacco family and many friends have worked tirelessly to find her or uncover clues to solve this mystery. 

In the last 48 hours, there have been numerous media reports that two men in Nepal have been charged with her murder. But members of Aubrey's family tell me tonight that these reports have not been reported accurately. 

Aubrey's mother, Connie Sacco, tells me that the reports about Aubrey were prematurely leaked to the Nepal media and were inaccurate. Connie confirms that three arrests were made in Nepal, but contrary to what some have written in the last two days, there were no admissions made and no camera or clothing found. The results of the questioning of these suspects were inconclusive. 

Connie told me tonight, "We have posted our 'official' response and up-to-date information from Nepal about the three arrests and the Nepal new articles, about being woken up by Fox News at 5:30 a.m. and contacted by the Colorado Daily Camera before we had ever heard anything official from Nepal. We remain hopeful, but the anxiety and fears we just lived through were horrible."

Also tonight, Aileen Barry, a Sacco family spokeswoman, said, "The Nepal media information turned out to be inaccurate. We are back to square one. Right now, the embassy said the police are still diligently pursuing the investigation."

Scott LacLennan, a friend of the Sacco family who was trekking in the area at the same time Aubrey was there, but on a different trail, tells me that there is a history in Nepal that "urges caution. Years ago, there was a Brit that turned up dead in the same area and the police arrested the boys who found the body. There is pressure on this case due to the other case involving an American who married a Nepali and then allegedly committed suicide. It's entirely possible the police simply want this closed and arrested these people just to close the case."

Aubrey, who graduated from the University of Colorado in 2009 with a double major in art and psychology, was nearing the end of a five-month journey of self-discovery through India, Sri Lanka and Nepal when she disappeared. On this trip she taught yoga, studied meditation and volunteered to teach children in one of the region's poorest schools.

Aubrey had been everywhere from Costa Rica to Greece to Thailand before taking a 45-hour train trip to Katmandu, Nepal, followed by a 10-hour bus trip to Syabrubesi to get to the western tip of the park. 

But she may have made a fatal mistake when she left her laptop and other items at a hotel and headed out on the popular Langtang Trek trail alone. It was the end of the trekking season and very few other backpackers were in the area.

Ever since Aubrey disappeared, her family has been on an impassioned and some might say quixotic quest to find Aubrey. Authorities and family members have made several searches of the area. Aubrey's family was back in Nepal as recently as three months ago. 

Tonight, the family urges calm and caution, and of course continues to hope for the best. On Aubrey's Facebook page, the Sacco family writes the following:

Here is the rest of the story. This is our last 48 Hours.

Friday:

We received a telephone call at 5:20 am from a television network asking, how we felt about the arrests made in connection to Aubrey, as the media had received an AP (Associated Press) message from Nepal. We told them, in our sleeping stupor, that we didn't know what to think as this was the first we had heard. There had not been any official communication from the US Embassy or Nepal Police and we were shocked!

A second call came in from a Colorado Newspaper, this time asking us how we felt about Aubrey's murder!! We immediately got on Facebook and found stories from Nepal newspapers mentioning admissions of murder, master-minding a plan, and as many as five arrests.

Shortly after, we received a call from the US Embassy in Nepal stating there had been a leak to the media about an arrest of 2-3 suspects in connection with Aubrey's DISAPPEARANCE.

We immediately posted on Facebook what we knew thus far and were reluctant to give any statements prior to receiving further information through 'official channels.'

We waited, we asked you to bear with us....

Saturday:

The US Embassy confirmed again that the reports about Aubrey were prematurely leaked to the Nepal Media and were inaccurate. This is what we were afraid might happen as Nepal's media can be very unreliable. Although 3 arrests were made, the rest of the reports were wrong. There were no admissions made and no camera or clothing found. The 3 parties were questioned, but the results were inconclusive. The good news is that the police will continue to diligently pursue the investigation into Aubrey's disappearance. We have a great team in place and that is all we can hope for.

Thank for your support and for following us on this journey. These ups and downs are upsetting, but we continue to have hope that Aubrey is alive. WE LOVE YOU AUBREY, WE CONTINUE TO HAVE HOPE.