Laurie Kelley

Alternative Pain Relief

Laurie Kelley February 11, 2024

Pain is highly personal. No two people experience the same feeling of pain, even when it’s the same injury, like a muscle bleed, or experience, like childbirth. A joint bleed may feel tingling to one, stabbing to another, or throbbing to someone else. A man with hemophilia A said, “Pain is pretty deeply personal. I personally have never been able to figure out what to say when a nurse asks me to describe my pain.”

But it’s especially personal when trying to describe the level of pain. Doctors often ask patients to rate their pain on a scale of 1 to 10. But what is a 1? What is a 10? A level 8 to one person might be a level 3 to another. Ed, who has hemophilia A, notes, “The HTC [hemophilia treatment center] will understand that most of us older guys have a base pain level that stays steady at a 5 or 6 every day. We’ve gotten used to that level of pain and this is our ‘normal.’ What’s difficult is when you go to an ER and try to relay that same information.” This is critical when people with bleeding disorders try to explain their level of pain to their doctor. Not appreciating or understanding how much pain a person is feeling may lead to an inefficient treatment for that pain.

Bonnie interprets her pain at lower levels when compared to people without a bleeding disorder. “I feel like what would be painful to someone else is just the norm for me. And I don’t find it painful because I’ve learned to live with it.”

Because pain is so personal, medication may not be the first—or the only—option for chronic pain. Instead, both patient and physician can consider different types of complementary and alternative medicine (CAM) to learn how to handle chronic pain. And like pain, CAM can be highly personalized as well.

What Is CAM?

CAM is any adjunct (additional) therapy, like massage, used along with conventional medicine. It’s an important part of a multimodal or multidisciplinary approach to pain management. It’s also important in integrative medicine, which focuses on the whole person and makes use of all appropriate therapeutic approaches, healthcare professionals, and disciplines to achieve optimal health and healing. Here are some of the most common CAM therapies:

Relaxation Therapies. Relaxation teaches you to relieve tense muscles, reduce anxiety, and alter your mental state. Mindfulness meditation helps you focus attention on a specific object or your breathing patterns to induce relaxation. Guided imagery is a conscious meditation technique of relaxation followed by visualization of a soothing mental image, like walking on a beach at sunset.

Biofeedback Training. You can learn how to recognize and change your biological reactions to stress and pain by using electronic equipment to monitor your physical responses: brain activity, blood pressure, muscle tension, and heart rate.

Behavior Modification. Some people with severe chronic pain may become anxious, depressed, homebound, dependent, or bedridden. Behavior modification helps you create a step-by-step approach to confronting challenges by changing your behavior and shifting your attitude. Matt Barkdull, a man with hemophilia B who is also a licensed mental health specialist, says, “Behavior modification and stress management are my go-to interventions. I resist the urge to curse my bad luck, attack my self-identity, or become bitter (for that which we harbor is that which we attract). I believe pain is there to teach me a lesson, to remind me to appreciate better days ahead. When I meditate upon these things, I become more grateful for the important things in my life, and make better decisions. These interventions seem to work best when pain is dull but constant and for bleeds that are relatively minor but have caused some mobility problems that will require a little time to heal. Spiking and blinding pain (deep muscle bleeds from injury) often requires me to reach out and share my struggles, perhaps take a pain pill or two, and seek some relief. It’s hard to be mindful while battling the sting of acute pain. However, I find if I deliberately engage in deep-breathing exercises and stay connected while avoiding allowing my mind to wander and unhinging from false perceptions, the pain is much better controlled.”

Stress Management Training. If your pain level is high, your stress levels probably are, too. This training helps you maintain a routine schedule for activity, rest, and medication. It incorporates exercise or physical therapy into your daily routine, and trains you to keep a positive outlook.

Hypnotherapy. Therapeutic or medical hypnosis directs your focus inward to help you relax and reduce pain and anxiety. You can learn self-hypnosis from a trained hypnotherapist.

Counseling. Individual, family, or group counseling with a professional trained in pain management can provide emotional support and guidance. Tina, mother of two young children with hemophilia A, notes that anxiety is a type of pain: “Most of my boys’ pain is anxiety-related. It causes discomfort. I feel my children are more anxious than non-hemophilic kids because they associate injury with the added step of factor.” George adds, “Speaking with a mental health professional and learning meditation helped me the most. I can’t tell you how at peace I became when my mind accepted the fact that pain is part of my life and I can turn it into power and motivation to help others.”

Acupuncture. Many patients report pain relief from this ancient Chinese technique of inserting and manipulating thin needles into specific points on the body known to control pain pathways.

Dozens of other therapies, including acupressure, massage, and chiropractic manipulation, may help control pain. Transcutaneous electrical nerve stimulators (TENS) deliver electrical impulses to interfere with pain transmission. Ultrasound therapy warms joints internally to provide pain relief, and laser treatments may provide relief in a similar way.

A good management plan for chronic pain must be personalized. It should use a multimodal approach, which addresses the psychological component of chronic pain by treating depression and reducing anxiety and stress. A multimodal approach includes adjuvant therapies (antidepressants and anticonvulsants); an exercise and/or physical therapy component; and some form of CAM, which allows the person to manage moderate to severe chronic pain with the lowest possible dose of painkillers.

Here’s how Max, a person with hemophilia A, sums up personalized pain: “I’ve had to learn to understand my pain in ways that were perhaps discouraged at an earlier age. Pain is a friend; it’s part of me. I’m learning from it every day and learning to live with it makes it less of a burden.”

Acupuncture is safe for people on prophylaxis. If you’re considering acupuncture, first talk to your hematologist or the staff at your HTC.

Why, When, and How People Start Hemophilia Organizations

Laurie Kelley February 5, 2024

Social media has become a forum for advocacy, sharing ideas, and raising concerns about anything related to leadership in hemophilia. With the recent changes at Hemophilia Federation of America, people are concerned about leadership in our community: what is happening now, and what will happen in the future? I’m in the process of writing another book on leadership, so the topic has been on my mind. Here’s an excerpt from my book Success as a Hemophilia Leader, about when people decide to start hemophilia organizations, and why. It may not be directly relevant, but it has ideas to appreciate and think about.

Leaders start hemophilia organizations for many reasons. Whatever the reason, the founder of a new organization almost always reaches an emotional threshold: “I cannot accept this
situation anymore.” At that point, the new leader decides to take personal responsibility: “Something must change. I will change it.”

Do you see yourself in any of the following life-changing situations?

You need factor for yourself or your child. When there is no factor or advanced treatment in your country, you may request a donation of factor from charitable organizations such as Project SHARE and the World Federation of Hemophilia (WFH) Humanitarian Aid Program. These organizations might encourage you to start a hemophilia organization.

In 2017 Kunaal Mark Prasad of Fiji requested factor from Project SHARE via Facebook. At age 23, he had never had any. His doctors were reluctant to use concentrates, and instead
used cryo, a risky treatment. After his first factor infusion, Kunaal realized that he could help improve the lives of the estimated 60 people with hemophilia on his islands. He began reaching out, to find others and to start a hemophilia organization.

In 1998 Francisca Bardalez, from the Central American country of Belize, contacted LA Kelley Communications, for a factor donation. Francisca is the mother
of four boys—two with hemophilia. A single factor donation would help her boys, certainly.
But what then? I suggested that Francisca form a hemophilia organization. This was a
challenge, because Francisca lived in a remote area, where roads were rough and money was
limited. But her dedication triumphed. Francisca founded the Belize Hemophilia Society
on February 13, 1999.

This is how hemophilia organizations were formed with our help in Jordan, Tanzania,
Ghana, Zambia, Barbados, Fiji, and Rwanda. Watching your own child, a family member,
a fellow patient or friend suffer the excruciating pain of uncontrolled bleeding is a powerful
incentive.

You are inspired by another Hemophilia Leader. Leaders have strong motivational
effects on others. In the late 1990s, Raja Ammoury of Jordan, mother of a child with hemophilia,
read a story in the newsletter Hemophilia Leader about Jad Jadallah of Palestine. Jad is
a man with hemophilia who founded the Palestinian Hemophilia Association. Like Jad, Raja
is Muslim, and she felt a strong connection with him. Raja contacted me through her sister
in Ohio (US), an acquaintance of mine, and asked for advice. Inspired by Jad’s success, Raja
formed the first hemophilia organization in Jordan.

Hemophilia Federation (India), one of the largest hemophilia organizations in the
world, was founded in 1983 by Ashok Verma, a person with hemophilia. Ashok was inspired
by another leader, Professor Pier Mannucci, an Italian hematologist who also served as vice
president medical of the World Federation of Hemophilia. Professor Mannucci oversaw the
amputation of Ashok’s leg in Italy, and every night during the recovery period, Mannucci
visited Ashok as his doctor, but gently pressed him to consider starting a hemophilia organization in India. Ashok returned to India undecided. But Mannucci didn’t give up. He called Ashok daily to encourage him. Ashok was inspired by Mannucci’s attention and care. He
found his calling as a new Hemophilia Leader.

You want to start a chapter. At the WFH Congress in Montreal in 2000, I met
María Andrea Robert of Argentina, a young mother of a child with hemophilia. María told
me, with many tears, that she felt her national hemophilia organization was not reaching
families like hers in remote areas of her country. María briefly considered starting a new
organization—a second organization.5 But after careful consideration, María decided to
open an affiliate—a chapter—to coordinate with the national organization in Buenos
Aires. She could learn from the staff and use their resources, yet channel some of these
benefits to Cordoba, where she lived. María now runs a successful chapter and works well
with the national organization.

You have hemophilia and a special skill. It’s fortunate when someone with hemophilia
and a specialized skill, such as lobbying, medical knowledge, or public relations, can become
the leader of a hemophilia organization. Yuri Zhulyov is a lawyer with hemophilia. As president
of the Russian Hemophilia Society (RHS) for the past 20 years, Yuri brings enormous
talent and skill to helping decipher Russian law and moving his programs and goals through
the Russian legal system.

You resurrect a nonfunctional hemophilia organization. Your country may have a
hemophilia organization that is nonfunctional. The governing board never meets, the office
is deserted or nonexistent, and there is little or no communication. This happened in Puerto
Rico, an island territory of the United States. Yolanda Vega, the concerned mother of a child
with hemophilia, eventually tracked down the former president of Asociación Puertoriqueña
de Hemofília—who confessed that he was too busy to manage it. Rather than start a new
organization, she formed a new board and drafted a new constitution, also called bylaws.
Within one month, the Puerto Rican Hemophilia Association was reborn.

You are a physician and want to help patients. There may be nothing nobler in our
hemophilia community than a dedicated physician who becomes part of, or creates, a
hemophilia organization. He or she may already be struggling with the country’s lack of
resources, and may have a large caseload of not only hemophilia patients, but patients
suffering from other blood disorders or cancer. Many physicians offer free treatment, work
long hours, and open their hearts to these patients. One such physician is Dr. Gillian Wharfe
of Jamaica. She gives an extraordinary amount of time to treating hemophilia patients. She
offers her leadership and medical assistance to the Jamaican Hemophilia Association.

Sometimes, as Gandhi once said, we need to be the change we want to see. HFA is looking for board members right now; you can be apart of this change, if you have the vision, passion and skill to be a Hemophilia Leader.

Remembering a Pioneer in Medicine

Laurie Kelley January 28, 2024

I subscribe to “This Day in History” app, which daily sends along fascinating tidbits of history that happened that day. This past week, on January 23, my phone dinged bright and early: this day in 1849 the first female doctor in America was awarded her medical degree: Elizabeth Blackwell.

Who was this daring and pioneering woman?

This was in a time when medicine was still in its infancy. I read in a book about this era that central Baltimore was an unsanitary backwater without municipal sewers. Bathwater, chamberpot contents and manure flowed across cobblestones. Water was contamination. London would soon be ravaged by a cholera outbreak that later gave birth to public health.

Elizabeth Blackwell was born near Bristol, England on February 3, 1821, the same town that the first family with hemophilia in America hailed from, ironically.

Blackwell came from an unusual family, full of activists. She was the third of nine children of Hannah Lane and Samuel Blackwell, a sugar refiner, Quaker, and anti-slavery activist. Blackwell’s famous relatives included brother Henry, a well-known abolitionist and women’s suffrage supporter who married women’s rights activist Lucy Stone; Emily Blackwell, who followed her sister into medicine; and sister-in-law Antoinette Brown Blackwell, the first ordained female minister in a mainstream Protestant denomination.

A few years after the Blackwell family moved to Cincinnati, Ohio in 1832, the father died, leaving the family broke. Elizabeth, her mother, and two older sisters worked as teachers. Blackwell was inspired to pursue medicine by a dying friend who said her suffering would have been better had she had a female physician. But there were few medical colleges and none that accepted women, though a few women became unlicensed physicians, as did many men.

Blackwell eventually “boarded with the families of two southern physicians who mentored her. In 1847, she returned to Philadelphia, hoping that Quaker friends could assist her entrance into medical school. Rejected everywhere she applied, she was ultimately admitted to Geneva College in rural New York, however, her acceptance letter was intended as a practical joke.

Blackwell faced discrimination and obstacles in college: professors forced her to sit separately at lectures and often excluded her from labs; local townspeople shunned her as a ‘bad’ woman for defying her gender role. Blackwell eventually earned the respect of professors and classmates, graduating first in her class in 1849. She continued her training at London and Paris hospitals, though doctors there relegated her to midwifery or nursing. She began to emphasize preventative care and personal hygiene, recognizing that male doctors often caused epidemics by failing to wash their hands between patients.” *

In 1851, she returned to New York City, and with help from the Quakers, Blackwell opened a clinic to treat impoverished women. In 1857, she and her sister, now also a doctor, opened the New York Infirmary for Women and Children, with colleague Dr. Marie Zakrzewska. They provided positions for women physicians.

In 1868, Blackwell opened a medical college in New York City. A year later, she placed her sister in charge and returned to London, where in 1875, together with Florence Nightengale and Thomas Huxley and others, created the first medical school for women in England. She became a professor of gynecology here. She co-founded the National Health Society in England (which today services people with hemophilia) and published several books, including an autobiography.

She had a fascinating personality, and was a dedicated advocate and activist of many causes. A pioneer in medicine and champion that perhaps many of us in bleeding disorders can appreciate.

*Chicago – Michals, Debra. “Elizabeth Blackwell.” National Women’s History Museum. 2015. www.womenshistory.org/education-resources/biographies/elizabeth-blackwell.

Layoffs and Life Cycles

Laurie Kelley January 21, 2024

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.

Dr. Morbius’s Rare Blood Disorder

Laurie Kelley January 14, 2024

Last week we profiled Morgan Hampton, who works for DC Comics, providing the writing for the uber cool character Cyborg. Marvel Comics has its own universe of characters, of course, and our archivist Richard Atwood has written this week about Marvel’s Dr. Morbius, as he appears in the 2022 Columbia Pictures “Morbius,” staring Jared Leto. It’s available for free with a Netflix subscription, and iTunes for a rental fee.

Morbius, like people with hemophilia, has a rare blood disorder.

Richard writes:

Michael Morbius (Jared Leto) is born with a rare blood disorder that has no cure. Since his childhood in Greece, and subsequent schooling for gifted children in New York City, he has needed crutches to barely walk. After earning a doctorate at age 19, Morbius discovers which DNA he is missing. As a leading authority on blood, he creates artificial blood, for which he is receives a Nobel Prize nomination, an honor that he rejects.

At Horizon Lab, he conducts research and sees patients. Funded by his childhood friend Lucien (Matt Smith), who he re-names Milo, Morbius conducts expensive, illegal and unethical experiments in a laboratory aboard a cargo ship that is sailing in international waters, thirteen nautical miles off the coast of Long Island. Morbius, along with his colleague Dr. Martine Bancroft (Adria Arjona), mixes human DNA with vampire bat DNA that he collected in Costa Rica. These bats feed exclusively on blood and have an anticoagulant in their saliva. When Bancroft injects Morbius with the mixed DNA serum, he adopts the characteristics of bats, assuming great speed, agility and strength, and echo location. When agitated, he assumes the physical characteristics of bats, especially their impressive fangs and claws, which he then loses when he returns to calm.

Morbius, after turning into the bat-like creature, kills the entire security detail of eight thugs on the research vessel, and drains their blood. FBI agents arrest Morbius for these murders, and place him in the Manhattan Detention Complex, from which he escapes.

Milo, the true villain of the story, wanting simply to live longer, takes Morbius’s serum and hungers for blood. He drains the blood of his victims, killing them. Morbius is accused of these additional murders and becomes known as the “vampire murderer” in NYC. Still on the run from the police, Morbius creates two doses for an antibody that inhibits ferritin and induces massive iron overload and instant hemochromatosis. When Milo bites Bancroft to drink her blood, Morbius injects the antibody into Milo, killing him. Bancroft, turned with red eyes, remains alive.

Morbius in the Marvel comics version is actually a villain for Spider-Man. The uncredited supporting cast is composed of millions of bats who come to the aid of the antihero. The movie had two wins and four nominations for awards. The budget of $75 million was surpassed by the world gross of $167 million. The rare blood disorder and its missing DNA are never identified, though drinking artificial blood is a treatment that lasts only six hours for Morbius.

And from me (Laurie), likewise, a blood transfusion from a person without hemophilia would stop a hemophilic bleed only temporarily, as the blood is used up. The lesson? Use your factor if you have hemophilia! It won’t turn you into anything except healthy.