Laurie Kelley

Good News from CSL Behring

Here’s some good nes to kick off the new year; just in from CSL Behring:

“We are pleased to announce an important update to the IDELVION Connect Copay Program.* In recognition of the ongoing needs of the patient community and our commitment to providing meaningful support, we are increasing the maximum eligible out-of-pocket copay assistance from $12,000 to $20,000 per patient. To enroll, patients and Specialty Pharmacies are encouraged to contact IDELVION Connect at 1-800-676-4266.

“What is Changing

  • Effective, January 1, 2026, CSL has increased the out-of-pocket IDELVION copay coverage up to $20,000 per year for each eligible patient.

“What is Not Changing

  • IDELVION Copay Support Program helps eligible patients with commercial insurance by assisting with out-of-pocket expenses for IDELVION. Most patients with commercial insurance pay $0 out-of-pocket.
  • Both patients and Specialty Pharmacies can contact IDELVION Connect at 1-800-676-4266 to inquire and/or process a copay coverage request.
  • If a claim is disputed for any reason, the Specialty Pharmacy is responsible for contacting IDELVION Connect at 1-800-676-4266

“If you have questions, feel free to contact IDELVION Connect at 1-800-676-4266.”

Making Maximum Impact!

I’ve been donating factor to developing countries since 1996 informally. Then in 2002, I founded Project SHARE to make it a formal part of my company, with a director and staff. Then, in 2019, I gifted that program to Save One Life, the nonprofit I founded, and started my own program—Maximum Impact. The idea is this this: simplified donating. No overhead, no employees, no fundraising. I extended my factor donations to include funding for home repairs, medical testing, school fees, surgeries and prosthetics. It gives maximum impact. Boom— me to them.

It might be impossible to know how many lives we have saved or improved over the decades, but I do have some data. This year was my best year ever for donating factor. Ready?

7,940,699 IU of factor VIII, factor IX, FEIBA and VWF donated overseas, worth at least $16 million. And let’s include the 4101 mg Hemlibra and 756 mg bypassing agents for a grand total of over $18.5 million.

It’s donated free of charge. We pay for shipping and any customs fees and wire fees.

The lucky recipients live in many countries. This year these include:

Bangladesh, Barbados, Bolivia, Cambodia, Dominican Republic, Egypt, India, Madagascar, Mexico, Pakistan, Philippines, St. Lucia, St. Vincent and the Grenadines,  United Arab Emirates, Vietnam, and Zimbabwe. Visit here to download our successes-to-date chart!

Our factor is donated to us from individuals, HTCs, hemophilia nonprofits, and specialty pharmacies. Often people have switched factor brands or have had unhappy experiences with their prescribed drug.

Our recipients are typically people I know and trust from decades of work in the international bleeding disorder community. They work for their national or local communities. In other words, they are well vetted.

While I try to help as many as I can, there are limits. We are limited by our donations, and by access to countries. Some countries have too many obstacles that put the donated factor at risk of confiscation or delay. I’m sorry for those patients who are unable to receive our donations.

I’m deeply grateful to everyone who has donated their unwanted and unneeded factor. And so are our recipient patients!

We look forward in 2026 to providing more factor, and funds for school fees, medical costs, and prosthetics for those who live in countries where access to these are limited or unavailable.

How to Donate Factor

I get asked this a lot: How best can I donate factor to you?  

I’ve been donating factor to developing countries since 1996, so I have a pretty good idea of the best ways to do this, from a charity point of view. Each year I ship out millions of IUS of factor, donated to us from patients, hospitals, specialty pharmacies and occasionally some hemophilia nonprofits. It comes in many ways: as vials in bubble wrap; as vials wrapped in newsprint; in coolers; with ice packs; in envelopes, boxes and occasionally bags—when someone actually braves our long driveway and brings it to my doorstep.

I appreciate every single vial and each IU. We save lives together. But…

There is a good way to donate, meaning efficient. It would help my efforts if everyone could help out and ship it in an efficient way. One, to better the environment, and two, to expedite my efforts to inventory and then ship out the factor to those in need.

So here are some tips!

  1. Contact me in advance in case you have any questions about your shipment.
  2. Do not send anything prior to 2020.
  3. Do not send us factor that is in-date and intended for you or your child to use. You must have a valid reason (switched product, failure of product to work…) to send in-date. And in-date goes to Save One Life, not to me.
  4. Do not use coolers or ice packs. This adds to expense, bulk, leads to wet boxes, and is very bad for the environment. I try to recycle and give away the coolers and ice packs, but it takes up a lot of time and is not always successful.
  5. Remove the vial of factor from its box. I only need the vial of factor. (Why? Because most people in developing countries can easily obtain sterile, medical grade water from a local pharmacy. They also can get all the ancillaries they need. These are cheap overseas. I don’t ship them because they are bulky and super-expense to ship relative to their worth.)
  6. Repeat: I only need the vial of factor.
  7. No sterile water, no needles, no filter devices, no gauze, no alcohol swabs. What to do with them? I know you also want to repurpose good items, so please donate them to a local animal shelter or veterinarian’s office.
  8. Package it carefully. Big vials, like those for Recombinate, von Vendi, Alphanate, and Humate-P can shatter. Use bubblewrap, paper towels or even packaging paper. (I recycle everything!)
  9. Advate cannot be removed from the plastic tube. You can send as is.
  10. Do not remove the sticky labels from the Advate tube! I need those for the vials of factor (I do remove them from the tube).
  11. Place the vials of factor in a protected cardboard box or padded envelope. Ship to me at 21 Sawmill Way, Georgetown MA 01833.
  12. Regular mail via the USPS is fine. I am all about saving money so no need to ship FedEx if you don’t want to. We do ship FedEx to other countries.
  13. Please do not request a signature! I live in a very secure place, and the mail carriers and FedEx people know us well. It’s safe!

That’s it! Watch this video for a quickie demo, and read the lovely thank you we received today from a young man in the Philippines…

“I cannot thank you enough for all the help. I have been sleepless for two weeks now enduring the pain. My mom and I pray for God’s help and guidance to let me through this toughest challenge of my life now. I am starting to give up, and here you are. Thank you and to the donors of this heaven’s gift. I cannot express how much this means to me.”

Thank you to all our compassionate donors! Happy holidays!

Get Ready for Flu Season

Having any chronic disorder means taking extra special care of your overall health. As we approach flu season, it’s good to revisit why it’s a good idea to get vaccines. I never had a flu vaccine until about ten years ago. Previously, a person who is in the business of vaccines asked if I had received my flu vaccine. I said no, never, and didn’t need it. Already had the flu and it wasn’t that bad. He replied, “You probably did not have the flu. then” I thought he was just trying to boost his business but guess what? When I legit caught the flu, and was in bed five straight days and couldn’t move, I thought about vaccines. Avoid the high fever, raging thirst, splitting headache, constant joint pain and nausea? I’ll take the shot.

I had Covid too, not too bad, even after having the vaccine. It made me realize that nothing is foolproof but precautions are a good idea.

Recently we had a new baby in the family. The young parents are requesting that we all wash our hands any time we want to pick the baby up. And wear masks if we’ve been traveling. I thought that was a bit overdoing it, but rethinking it, and reading the words of the esteemed Dr. Fauci, I realize that any precautions we can take these days against viruses is good. The hemophilia community knows this after enduring the horror of the 1990s, when HIV was rampant in the blood supply. In Fauci’s own words:

“Chickenpox is a virus. Lots of people have had it, and probably don’t think about it much once the initial illness has passed. But it stays in your body and lives there forever, and maybe when you’re older, you have debilitatingly painful outbreaks of shingles. You don’t just get over this virus in a few weeks, never to have another health effect. We know this because it’s been around for years, and has been studied medically for years.


“Herpes is also a virus. And once someone has it, it stays in your body and lives there forever, and anytime they get a little run down or stressed-out they’re going to have an outbreak. Maybe every time you have a big event coming up (school pictures, job interview, big date) you’re going to get a cold sore. For the rest of your life. You don’t just get over it in a few weeks. We know this because it’s been around for years, and been studied medically for years.


“HIV is a virus. It attacks the immune system and makes the carrier far more vulnerable to other illnesses. It has a list of symptoms and negative health impacts that goes on and on. It was decades before viable treatments were developed that allowed people to live with a reasonable quality of life. Once you have it, it lives in your body forever and there is no cure. Over time, that takes a toll on the body, putting people living with HIV at greater risk for health conditions such as cardiovascular disease, kidney disease, diabetes, bone disease, liver disease, cognitive disorders, and some types of cancer. We know this because it has been around for years, and had been studied medically for years.


“Now with COVID-19, we have a novel virus that spreads rapidly and easily. The full spectrum of symptoms and health effects is only just beginning to be cataloged, much less understood.
So far the symptoms may include:

Fever
Fatigue
Coughing
Pneumonia
Chills/Trembling
Acute respiratory distress
Lung damage (potentially permanent)
Loss of taste (a neurological symptom)
Sore throat
Headaches
Difficulty breathing
Mental confusion
Diarrhea
Nausea or vomiting
Loss of appetite
Swollen eyes
Blood clots
Seizures
Liver damage
Kidney damage
Rash
COVID toes (weird, right?)

“People testing positive for COVID-19 have been documented to be sick even after 60 days. Many people are sick for weeks, get better, and then experience a rapid and sudden flare up and get sick all over again. A man in Seattle was hospitalized for 62 days, and while well enough to be released, still has a long road of recovery ahead of him. Not to mention a $1.1 million medical bill.
Then there is MIS-C. Multisystem inflammatory syndrome in children is a condition where different body parts can become inflamed, including the heart, lungs, kidneys, brain, skin, eyes, or gastrointestinal organs. Children with MIS-C may have a fever and various symptoms, including abdominal pain, vomiting, diarrhea, neck pain, rash, bloodshot eyes, or feeling extra tired. While rare, it has caused deaths.


“This disease has not been around for years. No one knows yet the long-term health effects, or how it may present itself years down the road for people who have been exposed. We literally ‘do not know’ what we do not know.


“What we DO know [is we] are smart enough to be scared of how easily this is spread, and [we] recommend baseline precautions such as:

Frequent hand-washing
Physical distancing
Reduced social/public contact or interaction
Mask wearing
Covering your cough or sneeze
Avoiding touching your face
Sanitizing frequently touched surfaces

“The more things we can all do to mitigate our risk of exposure, the better off we all are, in my opinion. Not only does it flatten the curve and allow health care providers to maintain levels of service that aren’t immediately and catastrophically overwhelmed; it also reduces unnecessary suffering and deaths, and buys time for the scientific community to study the virus in order to come to a more full understanding of the breadth of its impacts in both the short and long term.”

I already got my flu and shingles vaccine this fall; did you?

’Tis the Season!

Does your child get excited during the holidays? Have spring fever or cabin fever? Can’t wait for summer vacation, turkey or Santa?

Seasons have an effect on people, whether chemical, biological, or psychological. Your child may experience seasonal bleeding patterns: bleeding happens at certain times of the day, week, month, or year. You may find that your child bleeds more often in the spring and summer, when the days are longer and he is more active.

Or your child may have seasonal bleeding around holidays. The bustle of welcoming relatives, eating sugar-rich foods, and receiving gifts can all create excitement, and this may mean more activity and increased bleeds. Accidents happen, and no one is to blame. What’s most important is treating promptly, so you can get back to the holiday fun! 

Thanksgiving and the December holidays are approaching. Be sure to have extra factor doses on hand, HTC numbers ready just in case, and watch for any sign of a bleed or breakthrough bleed, Staying proactive can keep the family active!

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