Laurie Kelley

The Beautiful Pharmacies

Officina of the Benedictine monastery at Schwarzach

It’s strange to think of pharmacies as beautiful. These days, they are more like hospital dispensaries, or small stores which contain many things besides medicine.

But not long ago, they were magnificent places to see. Last week we showed how, in the East, the Arabs began the first pharmacies. In the West, before science could determine a proven cause and effect for illnesses, many people viewed illness as a punishment or a trial from the gods or from fate. So throughout history there were often close connections between theology and medicine. Often, the healer was a person of divinity or faith.

In ancient Greece, Asklepios, a son of Apollo, was venerated as a powerful god of healing. The sick would spend the night in his temple, hoping the god would appear in a dream, bring healing, or reveal the treatment. His daughter Hygieia is considered as goddess of health. Her very name gives us the word “hygiene.” The Romans adopted Asklepios and called him Aesculapius, embodied in the snake.

Emperor Frederick II in 1231 officially recognized pharmacies as commercial entities with duties and rights. These dispensaries or apothecaries first began as medieval stalls or huts, surrounding churches, where people would buy herbs, oils and other remedies. Later these apothecaries were run out of offices, and medicine was dispensed from a window. Medicine would advance during the Renaissance from belief in miracle cures, faith healing, alchemy and superstition, to scientific exploration, experimentation, discipline and higher knowledge.

Early pharmacies in the West were beautiful, with therapies on display in porcelain or ceramic jars with Delft-like color and decorations, seated in rows on mahogany shelves. The Officina of the Benedictine monastery at Schwarzach, in the first half of the 18th century, was beautiful, with Baroque style furnishings. In the center of the pharmacy was the preparation table, with sixty carefully labeled drawers. Aesculapius, the antique god of healing, and his daughter Hygieia, kept an eye on the preparations. They hold their typical symbols, the staff and the snake. We still use the staff and snake to denote medical treatment.

You can view this pharmacy in Heidelberg, Germany at the Pharmacy Museum, as well as several others, to get a sense of how beautiful they were.

Notes from a visit to the German Pharmacy Museum, 2015

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

Retirement? Never Too Late to Plan!

Is retirement a distant dream for you, like winning the lottery? Or is it looming on the horizon like judgment day? On one hand, you may be looking forward to having more free time, pursuing your hobbies, and spending time with loved ones. On the other hand, you may be worried about running out of money, managing healthcare costs, or feeling bored or isolated in retirement.

The good news is that with proper planning and preparation, you can minimize the risks and maximize the rewards of retirement. Along the way, you’ll learn about common retirement myths and misconceptions, gain insight into the latest retirement research and trends, and discover practical tips and strategies for achieving financial security and fulfillment in your golden years.

Continuing the Journey is the essential retirement guidebook for people with bleeding disorders, written by a man with hemophilia.  It provides readers with comprehensive knowledge and practical strategies to navigate retirement planning and living. It offers step-by-step guidance on creating a tailored retirement plan, covering financial aspects such as retirement savings, investments, and Social Security. Beyond finances, the book explores the psychological and emotional aspects, advising on purpose, relationships, and personal growth. It encourages readers to consider lifestyle choices like part-time work, volunteering, and travel, aligning retirement with their passions and values. With this trusted guide, readers can ensure their retirement becomes a remarkable chapter of personal growth, joy, and fulfillment.

This book will guide you through the essential steps of retirement planning, including assessing your retirement needs, creating a retirement savings and income plan, and preparing for retirement life.

After a decade of volunteering for other organizations and learning about the bleeding disorder community from many aspects, Michael Birmingham created the non-profit organization The Bleeding Edge, which focuses on male adults with hemophilia. It provides experiences and educational content that is unique in the community.  In that educational content, Michael saw the need for courses on how to prepare for retirement, something that until recently people with hemophilia were told they didn’t need to worry about, as they didn’t really have a long-term future.  Medical advances have now given longer life spans, and the future is now something critical to prepare for in this community.  The knowledge and information in Continuing the Journey applies to everyone.

For more info: mjbirmingham@comcast.net

Order here!

“God has kept me alive…” to Serve

This essay was submitted by someone I have known since my first visit to Zimbabwe, in 2000. It is sad, and details a life of loss, and yet a life of hope. Please always keep in mind that in most developing countries, access to factor is almost impossible. If you think you have factor to donate, contact me, and I will help find a home for it. ~ Laurie, laurie@kelleycom.com

My name is Nqobizitha Ndlovu, which [is of Zulu origin] and means “Conqueror” in English. I’m 34 years old, living with hemophilia A since birth. I was born and live in Zimbabwe.

I was born into a family of four boys, of which I am the eldest. Growing up together with my siblings, life has not been rosy; it has been pain after pain, suffering because of hemophilia and life challenges as well. I am coming from a very poor family as my father used to do menial jobs to sustain us. 

Zimbabwe’s economy is in shambles and the health system is in a very bad state. The government hospitals have no diagnostic or any other important machines, or they are not working, if there is any at a single hospital servicing the whole country. No painkillers; blood transfusion is very expensive and it cost more than $100 American dollars for a single pint of blood. Only private hospitals can offer such services as diagnostics at a very high cost. That is a life of hemophiliacs in Zimbabwe.

My young late brothers and I endured a lot of pain considering our condition. We have been friends of the hospital quiet often and countless times. We have been relying on donated factor VIII ever since, with the help of Laurie Kelley. It has been a struggle in our journey of life as my parents struggled very hard to cater for our needs. 

Laurie Kelley with Khumbs, 2000

My parents and we were sharing a single bedroom house. School was another challenge for us as we used to walk for almost four hours going and another four hours coming back. That contributed to bleeding easily. Regardless of that we were excelling at our studies. 

In 1996 I lost one of my young brothers through tonsil bleeding; he was two years old and the third born. Mthokozisi was his name, which means “happiness” in English. After bleeding for three days from his tonsils, he unfortunately passed on.

The year 1998 was another bad one for me again. We had just knocked off from school. My young brother Khumbs and I, and other kids, were playing on our way home. Khumbs fell on his knee from high rocks. From there he couldn’t even move his leg as he had hit with a knee down. All the other kids left us there as I struggled to carry him on my back. We arrived home very late and Khumbs was in deep pain. He could not go to school anymore for at least two years. Khumbs’s knee developed an infection which resulted in his leg being amputated. Khumbs lost his leg like, just like that.

Nqobizitha in 2000

The year 2002 was another bad one for me again as I lost the person whom I had been relying on when I was not feeling well. My mom passed on as well. I was left broken and helpless at the same time. 

In 2003 I was still digesting the pain of losing my mother, when my father passed on. It became sorrow on top of another sorrow. I was really affected psychologically, physically and socially, and it also affected my schoolwork at the same time. I lost concentration on my studies. My health dwindled badly. 

In 2009 my younger brother Khumbs had an internal bleed which resulted in him passing on that year on November 9. Laurie Kelley had tried to source some factor VIII for him, which arrived in the evening. But he passed on in the morning. Now I had nowhere to go— no one to share my pain with as he was the closest to me.

In 2017 I was involved in a horrific incident where I lost one of my eyes. I was admitted for one and a half a months in the hospital and bled for 21 days nonstop. I almost lost my life, which became a miracle to be alive according to the doctors at Parirenyatwa,  Zimbabwe’ s biggest hospital.

During the time at the hospital it was discovered that I had developed factor VIII inhibitors. Laurie Kelley has done a lot for us that I cannot count it all. I am now using the NovoSeven which I always get from Laurie Kelley. 

Fast forward to January 2023. My one and only brother that I was left with also passed on through throat injuries and bleeding. He could not access factor VIII at the right time because he was in a remote area. That was the end of all my family members as I am now alone, with my son Brooklyn, a nonhemophiliac who is eight years old. 

I was recently voted to be the Zimbabwe Haemophilia Association as vice president. It’s a nonprofit organization. I want to serve people with hemophilia in Zimbabwe and any other bleeding disorders with all my heart. I have seen it all and I believe the high God has kept me alive up to this far to do that. We are doing all possible ways to reach out to every corner, to save some souls out there.

Co-Pay Caveats

The Texas Bleeding Disorders Coalition announced recently with pride that HB 999 passed unanimously, 31-0, out of the Senate. This bill will eliminate copay accumulator adjuster programs on state health plans in Texas. Patients with many chronic conditions and no generic options will no longer be penalized by CAAPS and have access to their life saving medication. This is the result of the hard work of so many over the last two legislative sessions.

What are accumulators, and why are they so important to those with bleeding disorders? Read the second of a two-part article by Paul Clement to learn why.

Insurance Company Efforts to Thwart Patient Assistance Programs Part 2

By Paul Clement

Copay Maximizeris also known as variable copay program.  Maximizer programs are a recent development in insurance, and are similar to Accumulator Adjuster Plans (AAP) in that they do not count the manufacturer’s copay assistance payments toward the patient’s deductible or out-of-pocket (OOP) maximum. They differ in that the maximum value of the manufacturer’s card is divided by twelve and applied evenly throughout the benefit year and there are no OOP costs for factor. Plan members are not hit with a “copay surprise” (see last week’s blog) with a maximizer program, but they are still on the hook for paying their annual deductible and coinsurance on all other drugs and services until they reach their OOP maximum for the year. And like AAPs, copay maximizer programs often use deceptive language in descriptions of the program, as insurance companies deliberately attempt to mislead plan members by claiming they are a benefit.

To implement an AAP or copay maximizer, the health plan requires a member to enroll in a separate AAP or copay maximizer program. The plan then deems certain specialty drugs, such as factor, to be “non-essential health benefits.” Non-essential drugs are still covered by the plan, but they are not subject to the Affordable Care Act (ACA) Essential Health Benefit requirements and can be removed from the OOP maximums required by the ACA, which in turn, enables the health plan to completely deplete all of the patient assistance funds!

Depleting all of the plan member’s assistance funds puts the sustainability of the patient assistance programs at risk. Although maximizer programs avoid the AAP copay surprise, they negate the intended benefit of patient assistance programs—and remove a safety net for patients who need expensive drugs like factor but cannot afford them.

What if you, a plan member, do not want to sign up for an AAP or maximizer program? Many plans make their AAP or maximizer program a “benefit” you can’t refuse. If you do not enroll, you are subject to a higher coinsurance, sometimes as much as 50%, and because the plan has deemed factor a non-essential health benefit, the coinsurance, along with your deductible, does not count towards the annual OOP maximum. This would potentially expose you to OOP costs exceeding $100,000 or more a year—not signing up is obviously not an option if you need factor. And even though this tactic would result in you paying many times more than the permissible annual OOP limits under the ACA, insurance companies are claiming the practice is legal. Their position is sure to be tested in the courts in coming years.

Both AAPs and maximizers reduce the health plan’s cost by shifting drug costs to manufacturers and plan members. High costs for drugs often lead to poorer health outcomes as a result of members avoiding use of the specialty drug—and this increases the risk of complications (like joint damage for people with hemophilia), potentially resulting in higher costs to the health care system.

And there’s one more threat to co-pay assistance.

Alternative Funding Companies (AFCs) are also known as patient advocacy programs or specialty carve-out programs. These companies include some pharmacy benefit managers (PBMs) and several third-party vendors which offer their services to health plan sponsors, such as employers that fund their own health coverage, promising to lower their drug costs. If an employer signs on, the AFC eliminates or “carves out” specialty drugs, like factor, from the health plan’s formulary and deems them “non-essential health benefits” to bypass ACA laws and regulations, including limits on OOP costs. Usually, the health plan member does not know this has happened until they place an order for their specialty drug and received a denial for the prescription or are charged a high coinsurance because the drug is now “non-essential.”

      At this point, the AFC steps in and offers to “rescue” the plan member (from a problem the AFC itself created)—you‚— by providing them the specialty drug at little or no cost. They then collect detailed personal information from you and, using a database of copay assistance programs, enroll you in multiple assistance programs, both pharmaceutical and private patient assistance programs (which is not insurance), to help cover the cost of the drug. AFC vendors also usually require you to sign a patient authorization form certifying that you are not enrolled in a health care program that pays for any portion of your prescription drug costs, in order to qualify you for some types of patient assistance (a certification which is usually patently false). When the funding runs out or if you are denied assistance, the drug is then usually covered by the plan using a “formulary exception process.” This means you must petition the insurer to cover the drug once again. And like maximizers, the “offer” to enroll with the vendor is not one you can refuse: those that do refuse are hit with exorbitant coinsurance rates they cannot afford.

Alternative funding companies are widely viewed by patient advocacy organizations as unethical because they deplete funds that have been allocated for people who truly need them. They flout the intent of patient assistance programs, which were created to help patients who genuinely cannot afford the cost of care—not to save money for plan sponsors. In addition, the process of removing drugs from the formulary, denying prescriptions, collecting personal data, enrolling patients in assistance programs, arranging for delivery of specialty drugs and then, later, returning them to the plan, all involve delays in which patients cannot access their therapy—delays which can pose a threat to patient health and even their life. These companies also impact the sustainability of vital patient assistance programs, with some companies responding by reducing the amount of assistance they provide or eliminating their patient assistance programs altogether.

Like AAPs and maximizers, alternative funding vendors are not transparent: they use duplicitous, deceptive language, describing their programs as a “benefit” and “advocacy services”—and they deceive both employers sponsoring health plans as well as plan members. (Many employers do not realize what they are signing up for.)

If you suspect you are being asked to sign up for one of these programs, contact your local hemophilia organization, or the NHF or HFA for assistance. And if you have a commercial health insurance plan and are experiencing a disruption in services or exorbitant coinsurance, including your factor being labeled as “non-essential,” contact your employer and let them know what is happening and how it is affecting your life—they may not realize how their health plan choices affect you.

HemaBlog Archives
Categories