Waste not, want not

According to Wikipedia, and many other sites, the US is the largest consumer group in the world, with spending about 69% of our GDP. We are the engine that drives global progress. With consumerism comes waste, of course, and we also reign in that. We generate more waste than any other nation with 4.5 pounds of “municipal solid waste (MSW)” per person per day.

When it comes to hemophilia, we produce the most factor, and we use the most factor. We represent only 4% of the world’s hemophilia population but consumer about 33% of the world’s factor. Do we also waste it?

The factor keeps coming in!

I think we used to. But now, we have a means to recoup unwanted and unused factor. In 1996 I started collecting factor that normally would have been destroyed. What started as 30,000 IU (back then, about $30,000 worth) has grown exponentially. Save One Life, the nonprofit I founded, collects about 7 million IU annually. Its current market value must be about $14 million if the donations instead were sold commercially. And it’s shipped out to about 35 countries each year (70 different ones in total).

And I collect the rest.

I can’t bear to waste anything and am always looking for ways to provide value and keep from adding to our consumer waste. It was amazing to learn how much factor is out there that no one wants.

Why is that? New products primarily. It used to be donations from loved ones who died from HIV; families would donate their factor. Then it was inhibitors; if ITT didn’t work, if a standard factor didn’t work, people would send to me. Now it’s mostly new products, which are coming on fast and furious.

How fast and furious? When I returned home from two weeks in the Caribbean (where I hand delivered about 250,000 IU), I found I had another 1 million IU shipped to me. In two weeks.

In just two months, March and April, I was donated 2 million IU, all from specialty pharmacies, patients and a few HTCs. With the new products and gene therapy, this would be a banner year for donations.

And what do I do with it? I ship it to patients all over the world. To some countries where there are no hemophilia programs or national organizations at all (like many of the Caribbean islands). To places where factor is available, like in Vietnam, but only at the major cities and hospitals, far from where many of the patients live. Thanks to FedEx, we get the factor there in no time.

It has been a godsend for so many. So I want to thank all of you for your donations. With each donation, I send a personal thank you note and a photo of a child you helped, like these boys below.

Consumerism isn’t all that bad, when we can truthfully pledge, “Waste not, want not.” Lives depend on it.

Casting a Vote

“Every time you spend money, you’re casting a vote for the kind of world you want.”

Environmentalist Anna Lappe

Pritam of India

It’s voting season here in the US, and this quote above comes to mind, but not about our politicians or economy. My friend and colleague Usha, from India, from time to time alerts me to people in dire need of help. Not just charity, but a way to give that makes a long-term impact. Like buying a prosthetic for a person with hemophilia so they can regain their dignity and livelihood. I’m totally on board with that. Consider this call for help she shared:

“I’m Pritam Rudra Paul, from Agartala, Tripura, India. I’m 28 years old, and have severe hemophilia B.

I was diagnosed with hemophilia in my early childhood. But due to wrong treatment and unavailability of free factors, I was unable to continue my treatment. As a result of repeated bleeding in my joints, both my knees were damaged, and I was unable to walk. Somehow from home I continued my studies as I was unable to attend school.

“In 2007, I went through a very hard time. I visited Christian Medical Center (CMC) in Vellore, India for a severe bleed and the doctor advised an operation. I requested help from many organizations, societies, HFI and doctors from Vellore. Finally I was able to continue my treatment and had my operation in 2009. I was finally able to walk properly!

Pritam and his family

“Life went on. I completed my graduation from college, and joined in a private firm, earning my own money. This is important because I come from a poor family. My father owns a very small business, selling fast food in a thela (cart). My mother is a housewife, and I have also a sister who is also studying in college. Our income puts us below the poverty line.

“Then, on November 21, 2021 I was married! But the day before that occasion, I got a serious muscle bleed in my right leg. It was hurting tremendously. I had infused many shots of factors, but the situation was going worst day by day. I went back to Vellore on December 10, 2021. After a check up they told me to go for another operation as an infection was already spreading all over the leg. The medical team tried their best to save my leg, but unfortunately couldn’t save it.  My life was at risk due to the infection. On December 24, 2021, my leg was removed.

“The worst part was the finances. Several times I had to go to Vellore. This required money for traveling, the operation cost, and medicine.  it was near about $8,000 US, and we earn less than $3 a day. In total, my family and my wife’s savings have been spent. I had to borrow money from my friends and relatives to pay for my treatment. During this time, I lost my job too. I must now look for another.”

Pritam Rudra Paul is an impressive young man by all accounts. No self-pity, always including his family in his concerns, and I agreed to help. And now? He has a beautiful new leg and is walking again! Check out the photos and videos. This is the kind of voting I like best.

Pritam emailed me yesterday and said,  “I’m very confident by walking with this. I hope I will return soon to my normal life again. Thank you for your support and blessing. We are always thankful to you and Usha.”

Cheers! To the Colburn-Keenan Foundation

The weather was spectacular in Simsbury, Connecticut for the annual “Wine by the Vine” fundraiser to support the Colburn-Keenan Foundation. I was happy to attend with my boyfriend Doug and met up with my brother Tim and his wife Lee. We also socialized with many friends from our hemophilia community including nonprofit friends, pharmaceutical and homecare rep friends and friends of friends!
For only a $50 admission ticket we were able to sample lovey and delicious wine and beer locally brewed by Rosedale Farm, where the event was held. It was fun to chat with friends, sample the goods, enjoy hot hors d’oeuvres and beautiful desserts, and listen to a folk singer from 3 pm – 6 pm.
Laurie Kelley with Sandy Williams of Novo Nordisk

The Colburn-Keenan Foundation is named in part after a legend in our community: Donald Colburn. Donald had hemophilia, HIV, and its complications and had already founded American Homecare Federation (AHF), a successful homecare company. Donald was responsible for kicking off NHF’s Campaign for a Cure back in 2000 with a half million dollar grant. They also had adopted a child with hemophilia from Eastern Europe. Sadly, Kathy passed away from cancer in May 2006 and Donald passed away from cancer in July 2006. The Colburn-Keenan Foundation, founded in 2006, represents their dream and a living legacy to their outstanding lives of philanthropy. The majority of their personal estates have gone into a trust to fund and sustain the Foundation, where amazingly 100% of monies raised will go directly to programs and services.

These services include providing financial assistance to individuals with chronic illnesses, with a priority placed on those living with a bleeding disorder. These include providing assistance with insurance premium, deductible, and co-pay expenses and assistance with all other socioeconomic expenses such as rent/mortgage, utilities, car insurance or repairs, medical travel, funeral expenses. And  the Foundation provides more!

Since its inception in 2006, the Foundation has provided a whopping: 1) $981,139 in individual assistance grants; 2) $188,000 in organization grants and 3) 118 scholarships totaling $544,000.

This generosity made it very easy for me to justify playing in the silent auction. Though  a fierce competitor beat me in the African Safari auction item, I did win James Taylor tickets (which I happily gave to my brother Tim and wife Lee, me being more a classic rock kind of girl; see my book review below) and Patriots tickets and a signed baseball by David Ross of the Red Sox, both of which I more than happily gave to sports-fan Doug. I was happy to take one of the many pumpkins home as my prize!

Congratulations to the stunning work of the Colburn-Keenan Foundation!

For more info:

Good Book I Just Read

Slash by Slash [Kindle]

You’ve got to give Slash credit for just being alive. The former guitarist of the 90s band Guns N’Roses uses a pacemaker to keep himself going after the wretched excesses of life on the road in one of the most popular bands of their era. In this bio, Slash, born in England as Saul Hudson, the son of parents already steeped in the music industry, runs wild as a child in the streets of LA, becomes a defiant teen, develops a true passion for music and the guitar and becomes an accomplished guitarist, helping to form the band GNR. Debauchery describes the band’s lifestyle and impact as it acted out with drugs, alcohol and sex, trashing hotel rooms, causing problems for everyone including police and business owners, and eventually ripping themselves in two when the volatile and mercurial Axl Rose has a prolonged showdown with the often drug-induced and soft-spoken Slash. To this day they do not speak. Slash tells his tale factually and hides nothing, except for an in-depth analysis of what really ailed Rose and GNR. Slash may have been too doped up to know. The birth of his first son was the impetus to get clean once and for all and he has come out ahead. He is a talented guitarist (just saw him live this summer, up close), and has evolved with several bands, currently with Myles Kennedy and the Conspirators. A good read, easy and interesting, but also sad… that so many rock stars are bent on self-destruction. Here’s one who went to the brink—and lived to tell the tale. Three/five stars.

Helping Hands

Times have been tough these past two years. I’ve been in business in the hemophilia community for 23 years and have never had so many call us for financial assistance, from helping to
pay tuition, to paying electricity bills, even the cost of gas to get to clinic.
Everyone in hemophilia should know about a program from Hemophilia Federation of America (HFA) that can help community members facing hardship.
HFA is a national nonprofit dedicated to advocating for, assisting and representing the bleeding disorders community.
Their “Helping Hands” program provides urgent assistance to individuals and families in the bleeding disorders community who are in a crisis situation. In 2011-2012, HFA distributed over $240,000 to about 470 households to help with expenses such as: housing, transportation, utility bills, and car payments.
And don’t forget your membership matters! In 2013, 100% of membership dues will go directly to the Helping Hands program. Become a member
today to help YOUR blood brothers and sisters in need:
Good Book I Just Read
Defending Jacob by
William Landay
Set in a suburb of
Boston, this novel tells the tale of Andrew Barber, a respected assistant
district attorney whose 14-year-old son is accused of murdering a classmate. His
world is shattered, his career is ruined as he prepares to fight the very court
system he has worked in for 20 years, to protect the mysterious and reclusive
son he loves. But the neighbors, courts and media are out for blood, someone to
blame, and all evidence points at the son. How far will Andy go to protect his
son, and discover the truth? I learned a lot about legal terms and matters, and
it’s a riveting tale, well told, with a twist in the end. A great
sit-on-the-beach book. Three/five stars.

“Nothing But a Child…”

The words of this delicate and nuanced Christmas song bring to mind Brian, the malnourished 13-year-old boy with hemophilia I met two weeks ago in Zimbabwe. I’m not the only one with his haunting image in my brain; others have written who want to desperately adopt him, or do something to help him. He is wracked with pain all over, with so many joints simultaneously swollen. He only weighs 50 pounds. He has no parents and lives in poverty. He can’t walk, and when I saw him, couldn’t even hold a cup to take a drink. He is slowly passing away. We are sending factor for him, and gave him several hundred dollars–a fortune for a poor orphan who lives in rural Africa–but it’s not enough.

We’ve all suffered this past week through the loss of 20 beautiful children in Connecticut, in my own region of New England. Christmas is a time for children; let’s put our heads, hearts and resources together to see what we can do for Brian. I think we need to get him proper care in the US, strengthen him and nourish him, and then he can return home healthier and ready to survive his teen years. We can teach him to self-infuse and we can actually get factor to him.

Would you like to help? Email or call me. Let’s see what we can do to give Brian a better life in Zimbabwe. Last week I reviewed the book Into Africa, about Stanley’s daring journey to find the Scottish missionary, doctor and explorer David Livingstone. He was a deeply compassionate man driven with mission. On his tomb in Westminster Cathedral is written: All I can add in my solitude, is, may heaven’s rich blessing come down on every one, American, English, or Turk, who will help heal this open sore of the world.”

He also wrote “Sympathy is no substitute for action.” So many write so say the picture of Brian haunts them but what can we do? That’s the question. The answer is action. At this time of year, it’s our duty to reach out and help those who suffer. It’s Brian’s turn.

“Nothing But A Child”

Once upon a time, in a far off landWise men saw a sign and set out aross the sandSongs of praise to sing, they travelled day and nightPrecious gifts to bring, guided by the light
They chased a brand new star, ever towards the westAcross the mountains far, but when it came to restThey scarce believed their eyes, they’d come so many milesAnd this miracle they prized was nothing but a child
Nothing but a child could wash those tears awayOr guide a weary world into the light of dayAnd nothing but a child could help erase those milesSo once again we all can be children for awhile
Now all around the world, in every little townEveryday is heard a precious little soundAnd every mother kind and every father proudLooks down in awe to find another chance allowed
Nothing but a child could wash those tears awayOr guide a weary world into the light of dayAnd nothing but a child could help erase those milesSo once again we all can be children for awhile
“Nothing but a child”
Source: LyricFind
Songwriters: Steve Earle
Nothing but a Child lyrics © BMG Rights Management, Universal Music Publishing Group, Warner Chappell Music, Inc
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