Specialty Pharmacies

Layoffs and Life Cycles

Boston had some bad news last week: Wayfair, a Boston-based national e-retailer of household goods, is laying off another 1,650 jobs, or 13% of its workforce. The CEO admits they are “bloated,” and had a hiring frenzy during Covid, when people stayed home and engaged in home repair and redesigning. It’s not the only major employer to do this: Google and Amazon have also laid off many workers, and even the classic magazine Sports Illustrated is facing massive layoffs and even bankruptcy.

Even the bleeding disorders community is facing its own layoff challenges, as Hemophilia Federation of America (HFA) laid off nine staff members, in a bid to make its financial structure more sound. This came as a shock to the community, and Facebook lit up with questions and even condemnation. Emotions run high in this community, as do expectations.

HFA cites the every-changing landscape of bleeding disorders, which primarily means funding. And funding is directly related to market share of different manufacturers, because most of HFA’s money, like NHF’s, like almost everyone in bleeding disorders, comes from manufacturers.

It wasn’t always like this. During the HIV crisis of the 1980s and 1990s, “pharma” did not donate as much as specialty pharmacies, which were on the rise in power and influence. HFA itself was founded by patients in direct response to the perceived lack of community representation and poor decision-making of the National Hemophilia Foundation (NHF), which the community believed let them down. It was believed that receiving funding from pharma influenced NHF’s decision-making on whether patients should continue to take injections of commercial factor VIII, when it was suspected of having HIV.

HFA refused money from pharma then, and only took money from specialty pharmacies. HFA was a grass-roots organization that seemed to truly put patients first. As time went on, particularly with the rise of Pharmacy Benefit Managers (PBMs), and as we predicted in a series of articles in PEN, which you can read here, insurers resumed their influence over access to product, and larger specialty pharmacies acquired and merged with smaller ones. The pool of donors was consolidating. Many of the small specialty pharmacies were founded and run by people with hemophilia.

Our community went from dozens of specialty pharmacies devoted solely to providing factor, to where we ended up now: Only a handful, with PBMs dominating distribution, and insurers dictating products and access to care.

All the more reason to have advocacy groups like HFA. Unfortunately, funding was consolidating too, and with insurers dictating benefits, specialty pharmacies had little influence over and subsequently little reason to woo patients. PBMs continued to dominate, and smaller specialty pharmacies continued to be absorbed… and disappear.

HFA now had to rely on pharma money, which is where we stand today.

And it’s true: the landscape is changing. We have an overcrowded field of products (download our factor chart), and a limited consumer group for these products. Top dogs with the highest market share will feel little need to contribute funds when their products are favored by both patients and prescribers.

But there is also the natural life-cycle of a nonprofit at play. We now have two national organization and dozens of state organizations: all to service several tens of thousands of people. Is it overkill? Products are state-of-the-art, safe, effective and abundant. What role will the nonprofits play? Do they need to consolidate to survive, just as specialty pharmacies did?

I was given this nonprofit life-cycle chart (below) by an executive director, which shows that nonprofits, like businesses, have life cycles. Read it carefully. Do we find ourselves in the “Stagnation & Renewal Stage”? Restructuring might be the first tactic to resolve this, so perhaps HFA has taken the right first step. We should try to understand and not condemn at this point.

A restructuring does, however, signal a scary time for those who fought so hard to bring HFA to life, keep it breathing, and keep it growing. In survival, the “fittest” are not the most funded or best even, but those that adapt to a changing environment. We need to know what is happening in the environment—here, funding sources, manufacturers, patient needs—and whether the current structure can survive. The board and CEO have decided it cannot. So it is attempting to adapt.

I wish it success, and pray it continues, as I am fond of HFA, proud of its achievements and know the community needs it, in any form.

A Gift of Islam: the First Pharmacy

Specialty pharmacies are vital and integral to a life with a bleeding disorder. But do you know the origin of pharmacies? I visited the Pharmacy Museum in Heidelberg, Germany once, and wanted to share what I learned.

Preparation of medicine, script of Galenos c. 10th century

The word “pharmacy” comes from the Greek word pharmakon, meaning medicine, poison, or magic potion! Long ago, diseases were often regarded as punishment by the gods, so priests as well as physicians practiced the art of healing.

Ancient beliefs about disease led to tailored methods of treatment. For example, in the miasma theory, it was believed that “bad air” caused disease, and treatment might be to avoid poorer places, which smelled bad, or to go to the country if possible for fresh air. From the ancient Greeks came the notion of the four “humors”—blood, yellow bile, black bike and phlegm. If these were not in harmony, a doctor might practice “bloodletting”—slicing open a vein to allow the bad humors to drain out.

Arabian Islamic Medicine: First Pharmacies

During the rise of the Arab empire, which covered much of North African in the mid-7th century, the Arabs dominated from Seville to Samarkand, and from Aden to Tbilisi. They translated ancient texts of Jewish, Indian and Persian origin. The combination of antique and Arabian knowledge initiated an amazing era of medicine, which considerably expanded medical treatments.

Walafrid Strabo (c. 809-849)

In fact, the first pharmacies emerged in Baghdad, then the center of the Islamic world!

Pharmacies in the Christian Occident

After the downfall of the Roman Empire in 455 AD,  medicine was practiced in the monasteries and convents of the Christian west. Educated monks and nuns worked there both as doctors and pharmacists. Some, like Walafrid Strabo (c. 809-849) and Saint Hildegard of Bingen (c. 1098-1179), increased medical and pharmaceutical knowledge with their scripts. Medicinal plants were grown in the monastic gardens. St. Hildegard has been considered by scholars to be the founder of German scientific natural history. And Strabo learned to create medicine, and brew beer!

Relevant antique scripts were kept, studied, and copied in the monasteries, including those of Islamic medicine. So both ancient and Islamic texts had a lasting influence on the creation of a future western pharmacy.

The medical school of Salerno in Italy, Schola Medica Salernitana,  taught antique medicine, kept close contact to the Arabian world and is considered to be the first center of scientific medicine in the west. Clerics and laymen, and Christians and Muslims met at this school which was open to everyone—even women!

Schola Medica Salernitana

Next week: The Beauty of Pharmacies in the West

Source: Notes from a visit to the German Pharmacy Museum, 2016

Switching Time

Insurance challenges was the topic of my talk in Pleasanton, California at a Herndon Pharmacy sponsored event Saturday evening. We had a great turn out with about 50+ patients and parents attending. We all enjoyed a delicious dinner at the Pleasanton Hilton, followed by my presentation on “The Current Storm.” The hour-long presentation covers what’s happening with hemophilia reimbursement, why it’s happening, how it all got started, and what families shoudl do to protect their insurance and choice. California is facing two major challenges: sudden switching of homecare companies by insurance companies, and a 10% reduction across the board on reimbursement by MediCal. Both measures hurt factor providers (340Bs and homecare) and parents are not very happy with the home care switching. For many parents, they don’t even know what questions to ask. Insurance is complex, ever changing… and necessary.

It was really great to meet some new parents like Christina and Colleen, patients like Art and Stanley, and families I’ve known for a long time, like Vicky and Burt, and Betty. All the attendees really enjoyed meeting each other: everyone knew somebody and it was like a big reunion. You could see the comraderie and joy everyone was feeling. Before everyone left we all sang happy birthday to Mark Helm, president of Herndon, who just had his 50th birthday.

Thanks to Zuiho Taniguchi of Herndon Pharmacy for inviting me and handling all the logistics, and to Mark Helm, for sponsoring this enjoyable event. And please see www.herndonpharmacy.com for more information on Herndon Pharmacy, a contributor of factor to Project SHARE for patients in the developing world, and provider of hemophilia services in the US.

(Photos: 1) Colleen, Laurie, Christina 2) Brochure 

Book I Just Read

Enough About You, Let’s Talk About Me: How to Recognize and Manage the Narcissists in Your Life
Les Carter

We all know people who love to talk about themselves. And we all know bores. But these are not necessarily people with bona fide narcissistic personality disorder (NPD). Carter explains very simply and easily what sets these people apart from people who just love talking about themselves. People with NPD can make your life miserable especially if you are married to them, have one as a sibling or parent, or as a boss. They lack the ability to be empathic and are notoriously difficult if not impossible to get into therapy or even get to see your side of a situation. Being with them is positively exhausting and narcissists are great at making you feel guilty and responsible for all that is wrong in a relationship. Carter offers excellent scenarios and great tips for dealing with those with NPD. Carter has a fundamentalist Christian background, and I did not like or agree with his view of children, despite that he is a popular author and therapist, and you may not agree with his linking original sin to this disorder. I also found the book very light, mostly anecdotal, with dialogues from his sessions with patients. This is a good book if you are new to psychology or narcissism. Two out of four stars.

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