Laurie Kelley
Merry Christmas to all!
Christmas holiday banner with golden balls and spruce branches on dark background hannazasimova
Leadership… Start When They are Young!
I was invited last week to attend the National Hemophilia Foundation’s Youth Leadership Graduation. This was a Zoom event, and it was so nice to see Dawn Rotellini, Brendan Hayes from NHF, and all the beautiful young people who have completed the program.
Have you heard of it? The NHF website states: NHF’s National Youth Leadership Institute (NYLI) provides young people (18-24 years old) in the bleeding disorders community with leadership opportunities to encourage personal growth, effect change, and positively influence others. The National Youth Leadership Institute is a two-year program designed to assist young people from the bleeding disorders community in becoming well-trained, recognized leaders.
Each graduate gave a statement about what the program meant to them, and what they accomplished through it. It’s pretty amazing to hear these young people speak about how they gave back to their community, mentored others, traveled to attend events, and most impressively, advocated at the state level about healthcare costs and employment concerns.
To meet this year’s Youth Leaders, go here.
If you are interested or know someone who could benefit from this program, encourage them to apply.
I’ve been studying leadership for decades, and even wrote a book about it, for those in developing countries. If you are a leader in the making, you might like to read it too, because leadership transcends age and borders. Leaders are not born, but are made, forged even. And leaders are readers! Order here.
Congratulations to all the NYLI graduates!
Popular Podcasts
Meghan Markle has been in the news way too much over her podcast “Archetypes.” Thirty seconds of it on YouTube was enough for me. I’m not much of a podcast person anyway; I’ve done a few and have not once listened to myself! I have listened to some good ones from Outside Magazine, but overall, podcasts are too slow and conversational for me. I like reading because I can absorb information a lot faster than listening to someone spoon feed me.
But… podcasts are popular!
You should check out a few, especially if you are a podcast person.
Probably the most popular in hemophilia is BloodStream, launched and operated by Believe Ltd. It’s incredibly broad in scope, with interviews with experts from all parts of the bleeding disorder community. Have you checked it out yet? Go here to try it out.
The BloodFlow might be the newest podcast in the community. It’s for young adults, and brought to you by Hemophilia Federation of America (HFA). The first podcast was launched on July 23, 2020, focusing on mental health issues. To listen to the podcast, search “The BloodFlow” on any podcast app. And if you have an idea for a podcast subject and want to be a guest, email advocacy@hemohiliafed.org!
Podcasts are increasingly popular. The number of people listening to podcasts surged in late 2020 and in 2021, thanks to the pandemic perhaps. Currently, 41% of people in the US listen to a podcast every month, and 28% listen weekly. According to Insider Intelligence, around 144 million people in the US will be listening to a podcast every month.
Give it a try! (But I’d suggest skipping Archetypes)
The Age of Gene Therapy: Why Plasma?
It’s happened: gene therapy is available, at least for hemophilia B patients in the US. The idea that hemophilia can be treated as a “cure,” or at least using one shot to cover your bleeding episodes for at least a few years, is tantalizing. And if not that, we still have recombinant products that have never touched human blood.
We just updated our factor chart here, which compares all the products available on the market for hemophilia A and B. You have lots of treatments to consider! But why are we still making plasma-derived products?
A few reasons. But first, understand where plasma-derived products come from.
Plasma-derived products come from human blood plasma. Plasma donors undergo strict screening for disease risk factors, and their plasma is tested for several viral diseases. Recombinant products are not derived from blood; they originate from genetically engineered mammalian cells containing the human gene for factor. Recombinants are produced in large bioreactors, with human and animal proteins used in the culture medium in first- and second-generation recombinant factor. Third-generation products contain no human or animal proteins in the culture medium or the final product. Fourth-generation products are made from human cell lines.
Although plasma-derived products potentially risk transmitting blood-borne viruses, all US factor products, whether plasma derived or recombinant, are considered safe by the FDA.
Why would anyone intentionally choose a plasma-derived product instead of recombinant? After all, recombinant factor is the product recommended by NHF’s MASAC. And now we have gene therapy for hemophilia B. Why inject anything other than the missing factor into your child?
For some people, it’s all about cost. Plasma-derived factor is less expensive than recombinant factor. And gene therapy is expected to cost about $3.5 million per shot. People who have high out-of-pocket expenses need safe products, but may choose less expensive ones. Sometimes, the decision depends on the type of bleeding disorder being treated. For example, intermediate purity factor VIII products contain factor VIII combined with VWF (the way it’s naturally found in the blood) and are useful in treating von Willebrand disease.
When choosing your factor therapy, always discuss options with your HTC! Use our factor product guide here, which now includes bispecific antibody products and gene therapy, and bring it with you, and ask what’s best for your loved one or you.
