For adults and children living with hemophilia and other bleeding disorders, getting the right care often means juggling appointments with multiple specialists, navigating insurance hurdles, and finding providers who truly understand the complexities of their condition.
Hemophilia treatment centers (HTCs) were created to address these needs. For more than 50 years, these specialized clinics have been bringing together a full team of health care providers — physicians, nurses, genetic counselors, social workers, physical therapists, dentists, and more — under one roof to provide coordinated, patient-centered care. This unique and holistic approach has been shown, time and again, to improve patient outcomes and help people with bleeding disorders live longer, healthier, and happier lives.
For a close-up look at this unique health care model, we spent a morning at UTHealth’s Gulf States Hemophilia and Thrombophilia Center (GSHTC) in Houston — one of the roughly 140 HTCs located across the U.S., where patients can address every aspect of their health in a single visit.
8:15 AM: Nurse Coordinator
Caiden Cranfill, 19, checks in. He and his grandmother, Sheila, are warmly welcomed by the front desk staff. Twice a year for the past 14 years, Caiden has visited the HTC for guidance on how to manage his moderate hemophilia A.
After a few minutes, Caiden is escorted into the clinic, where nurse coordinator Tate Denison, BSN, R.N., documents his weight and vitals. Caiden shares that he’s starting college in the fall and will do so while working as an assistant manager at a popular clothing store. The future is on his mind — and it’s something he wants to discuss with the GSHTC team.
“I’m in a very transitional period of my life, and I want to learn more about how to manage my own health care, learn more about new treatment options, and also learn about potential learning opportunities so I can get more involved in the community,” he says.
During today’s hemophilia-specific clinic, Caiden, as well as other patients, will meet with a medical “village,” a half dozen members of the HTC comprehensive care team during a single, multi-hour appointment.
Once within the quiet of the examining room, Denison takes Caiden through an initial intake, gathering important information about his history and current health status, including recent bleeds, ER visits, and hospitalizations, to provide a baseline for the other HTC team members.
“Most of the questions are what anyone would get at the doctor’s office — medical history, allergies, current medications,” Denison says. “But we also have some questions specific to hemophilia care. Is the patient carrying their medical alert? Are they keeping infusion logs for their therapy? When was their last infusion? What about their last bleed?”
After finishing with Caiden, Denison calls the next patient, Adair Almaguer Rodriguez, a 26-year-old man currently working at a wedding venue, to do his intake. Adair was diagnosed with severe hemophilia A as an infant and is also focused on improving his own health care management. He’s been coming to this HTC for as long as he can remember, attending his biannual appointments with his brother and his cousins.
“My mom and her two sisters both have kids with hemophilia, and we’d all come in at the same time,” he says. “The clinic was just packed with my whole family, which was really convenient for us so everyone could be seen at the same time and learn what we needed to do.”
8:45 AM: Hematologist
The HTC team meets at the beginning of every week to discuss the patients who will be coming into clinic. Miguel A. Escobar, M.D., GSHTC’s medical director, spends his time with patients like Caiden and Adair with the goal of addressing any potential issues.
“As a hematologist, my main concern is whether the patient is on prophylaxis to prevent bleeds. Are they compliant with the treatment? Are there any upcoming surgeries we need to plan for?” he says. “Every patient is different. We treat each patient according to their needs.”
9:15 AM: Nurse Practitioner
While Adair converses with Denison, Caiden receives his next visitor: a nurse practitioner (NP). Natalie Montanez, FNP-C, says she and her fellow NP, Joanna Larson, FNP-C, offer shared decision-making to their patients, an approach to treating diseases in which patients are partners in their own care. But where they really shine is “bridging the gap between clinical care and daily living.”
“Everything that happens after the visit, whether there’s a struggle or need for a dose adjustment, or maybe modifying for life events, we can act as that provider,” Montanez explains.
Montanez spent her time with Caiden discussing how to manage his disorder with all the upcoming life changes.
“We help patients find the best strategy for their goals,” Montanez says. “Once we have that plan, we are really focused on how to make that happen. With college, we ask questions: Will you have access to a fridge for your medication? Do you have access to a campus health center? Are you aging out of your parents’ insurance? You need all the logistics to come together to take the plan and make it a reality.”
9:45 AM: Genetic Counselor
Rida Haider, MS, CGC, visits separately with both Caiden and Adair to provide vital genetic education. She says the HTC model doesn’t just provide genetic counseling at the time of diagnosis, but across “the entire journey of the patient.” She makes sure to get a few minutes in with each patient during their appointment.
“This bleeding disorder has an X-linked inheritance model, which means people can be carriers and not symptomatic, and that makes it so important to ensure that every patient is aware of this and can discuss that risk with their future and current partners, as well as any children,” she says.
10:15 AM: Social Worker
Successfully managing hemophilia requires more than just the right treatment regimen, says Sabrina Farina, LMSW. In addition to treating mental health issues, HTC social workers also help with navigating financial and insurance concerns and facilitating access to community resources.
“My job is to be there for patients during even the most delicate, fragile times in their lives and to help them understand what is happening and how to best move forward,” she says. “It’s really about making sure that patients stay safe and feel like they are in a safe place.”
Adair says he appreciates speaking with Farina during his visits. “She’s always been really nice and helpful,” he says. “And she’s someone I’m very comfortable talking to.”
10:30 AM: Research Nurse
Both Caiden and Adair are currently using a bispecific antibody drug to help manage their hemophilia. Several other patients from GSHTC participated in research trials for the drug, helping make way for its approval by the Food and Drug Administration in 2017. The HTC has two research nurses who provide both administrative and clinical support for bleeding disorder research studies with the potential to advance new treatments, as well as to optimize current studies for the clinic’s patients.
“We generally have about 30 studies going on at any time,” says Daisy Garcia, BSN, R.N., a GSHTC research nurse. “We present all of our patients with any clinical trials they may be eligible for, answer their questions, and then they have the option whether they want to participate or not.”
11:15 AM: Phlebotomist
Once a patient finishes seeing everyone on the provider team, they have one more stop: the laboratory. There, nurse Dorian Williams, BSN, R.N., preps Caiden and then the phlebotomist does an inhibitor screen, a complete blood count (CBC) panel, and other tests to make sure treatment regimens are working.
“We can order anything any other practitioner can,” Denison says. “But no one has to be worried about bleeding because we use special tourniquets made for patients with bleeding disorders.”
On his way out the door, Caiden says he appreciates having the HTC team to guide him. He says it makes him much more confident about his future.
“Getting this kind of specialized care is completely different than what you can get somewhere else,” he says. “Everyone here has been great in helping me find a way to manage my care on my own. It’s a daunting task, but knowing I can call the nurse or the doctor and get my questions answered makes it a little bit easier.”
Other HTC Specialists: Dentists and Physical Therapists
Most visits at GSHTC include meeting with a physical therapist and dentist. Physical therapy is an important specialty for people with bleeding disorders, since a common complication of hemophilia is joint bleeds, Escobar says. “Working with a physical therapist can help determine the health of a patient’s joints and help them learn to avoid issues that may cause a bleed and make sure they can recover promptly after a bleed,” he says.
Adair says one of his main goals during his visit is to ensure that he can remain active. He plays soccer and works out regularly. Having a physical therapist with hemophilia-specific musculoskeletal training helps Adair and patients like him maintain their physical abilities and avoid injuries.
“Many of our patients want to stay active so we help them modify their exercise programs or sports activities so they can protect their joints and prevent problems,” says Laura Glover, PT.
Far too many patients avoid exercise, Glover says, because they are concerned about potential bleeds or are suffering from joint pain. Yet, regular movement — as well as maintaining an appropriate weight — helps keep the joints and the rest of the body healthy.
“If patients want to play sports, we go over the risk of those activities. We tell them how they can best protect themselves with safe gear like helmets or shin pads,” she says. “But we really encourage every patient to exercise in some way. Even if someone may be experiencing pain, you can find low-load, low-intensity exercises like tai chi, swimming, or body weight exercises that can help them stay fit and avoid chronic joint disease in the future.”
Larson says GSHTC puts a high premium on consistent dental care, and offers it as part of each patient’s biannual visit to make sure their teeth and gums remain in good shape. “Some of our patients haven’t seen a dentist in 20 years, because they are afraid of a bleed or were told by a doctor they shouldn’t see a dentist because of the bleeding risk,” Larson says. “Our dental program allows them to get the care they need and do it safely.”
If the Patients Can’t Come to the HTC . . .
Many people with hemophilia are unable to regularly receive care at GSHTC because they live too far away or can’t afford to travel there.
That’s why, twice a year, the GSHTC team travels to El Paso, Texas, to provide those in the area with an HTC satellite clinic. The Houston office, in the Texas Medical Center, serves nearly 750 patients who travel there from within a 200-mile radius. Yet El Paso, in the western part of the state, is, as Larson puts it, “kind of a desert for hemophilia treatment.”
“We rent some space at the El Paso Children’s Hospital clinic and spend time seeing local patients there,” she says. “The idea is that we can help them manage their hemophilia through the HTC model. They may have a local hematologist for emergencies, but we can manage their medications, give them advice, and provide everything we do in Houston.”
Escobar, GSHTC’s medical director, says that many of the country’s HTCs operate these kinds of satellite clinics. Having an experienced clinical team willing to travel makes it easier for patients in more remote areas to get the care they need.
“People will even travel from New Mexico and from across the border when we go to El Paso,” he says. “They know they can trust our team because we’ve been working with them for so long. Our goal is zero bleeds for each patient, and we, as a team, work together for every patient to try and achieve that.”
No Two HTCs Are the Same
Not all HTCs have the same resources or programs, and one of the main reasons is that their funding can vary widely. Most HTCs receive support from a mix of federal and state grants, hospital or university budgets, and income generated through the federal 340B Drug Pricing Program, which allows centers to purchase certain medications at discounted prices and use the savings to support patient services. Because funding sources differ from one HTC to another, the scope of services, staffing, and community programs they offer may not be the same. Find a hemophilia treatment center near you.