Arizona Hemophilia & Thrombosis Center
Arizona Health Sciences Center
The Arizona Hemophilia & Thrombosis Center (AzHTC) at the Arizona Health Sciences Center in Tucson, AZ is a comprehensive diagnostic and treatment center for individuals and families with hemophilia, von Willebrand Disease and other inherited bleeding or blood clotting disorders.
The Hemophilia Team
AzHTC provides multidisciplinary patient and family-centered care. This involves care provided by the HTC team – an adult and pediatrice hematologist, a hemophilia nurse practioner, a social worker, and a physical therapist. All HTC team member have received extensive special training and education in the complications of hemophilia and thrombosis and the needs of individuals and families affected by these disorders.
Bleeding/clotting Disorder Management
The team works with the patient and family to design a chronic disease and lifestyle management plan to fit the individual patient’s needs. As needed, the AzHTC team consults with the patient’s primary care provider, other medical specialists, teachers, mental health providers, dentists, home health company and insurance case manager. All services are provided on both an outpatient and inpatient basis. In addition, the team provides patient and family education, home treatment training and maintenance, genetic testing and counseling regarding psychosocial issues, academic progress, employment and insurance. The social worker and nurse practinioner make an annual visit to each school in southern Arizona that has an AzHTC patient in attendance. With thte exception of clinic visits and laboratory tests, most of these services are provided free of charge.
Outpatient and Inpatient Care
Inpatient and outpatient care is provided at University Medical Center (UMC), the Arizona Health Sciences Center’s teaching hospital. Pediatric and adult patients are seen in our Outpatient Clinics. All surgery is done at UMC with the bleeding or clotting therapy managed by the AzHTC team. University Medical Center has a level one trauma cener and an emergency room and urgent care center as well as a pharmacy stocked with a complete reange of clotting factor concentrates and other products used to control bleeding. There is also a high-risk obstetrics team/clinic on site to provide services for hemophilia carrieres and women with other bleeding disorders during pregnancy, labor and delivery. The Special Coagulation Laboratory at UMC does accurate diagnostice testing for all bleeding and clotting disorders.
How Does an Individual Access the Care Available in the HTC?
An initial appointment is made through the HTC nurse or administrative assistant. This appointment can be made by the patient or family, referring physician or other health care professional.
What is Done at this Initial Visit?
The patient will be seen by the hematologists and the hemophilia nurse practitioner. A medical, family and social history will be taken and the nurse practitioner will describe the services available and will determine any educational and/or diagnostic needs the individual or family may require.
Does the Patient Need to get all of his/her Hemophilia Care at the HTC?
Definitely, not. The services that are provided are at the discretion of the patient and his or her health care provider. Patients may take advantage of any of our services, but still receive their hematology care through another provider. The HTC does not provide pediatric or adult care and it is recommended that the individual continue routine, non-hematologic care through his/her primary care provider.
Are There any Requirements on the Patient’s Part to Access HTC Services?
We strongly suggest that each patient get an annual Comprehensive Hemophilia Evaluation by our multidisciplinary team. Our findings and recomendations are then sent to the patient or family, the primary care physician and/or the referring hematologist. All prescriptions for clotting products are written by the physician or nurse practitioner and sent to the patient’s chosen home care provider.
What are the Advantages of Being Seen at the HTC?
Research published several years ago showed that patients with bleeding disorders who were seen at HTC’s had a 60% less risk of death and/or serious complications from their bleeding disorder than patients who received all their care from non-Hemophilia Treatment Center providers or institutions.
You can receive free counseling, education and support services that might not be available to you in a private physician’s office. This includes visits to your child’s school, contact with the school nurse, information about insurance coverage, home care delivery and lifetime insurance caps, Medicare and AHCCCS coverage.
You and your family members can be taught intravenous access techniques so that replacement therapy can be given at home either on demand or as prophylaxis to prevent hemorrhages. Hemophilia education can help you to manage your disorder, prevent serious complications and help you to be more independent.
You will have access to a hemophilia care provider for consultation or treatment 24 hours a day, 7 days a week by calling the UMC page operator at 520-694-6000 or 1-800-442-2868 and asking for the hemophilia nurse on call.
You will have information about the latest research and advances in hemophilia treatment and hemophilia treatment products and you will have the opportunity to participate in clinical trials for new hemophilia products.
Care of Persons and Families with Thrombophilia
Thromboembolic events (excessive clot formation) comprise a major cause of disability and death. Accurate and prompt diagnosis is the key to successful therapy and prevention of complications of venous or arterial thromboembolism. Recent discoveries of common inherited genetic mutations that predispose individuals to such events, e.g. factor V Leiden, have places HTC personnel in expanded roles. Hematologists who regularly participate in the care of patients and families with bleeding disorders are uniquely skilled, knowledgeable and experienced in blood coagulation problems and clinical practice. The same skills and knowledge of preventive medicine, carrier detection, genetic and prenatal counseling, patient education, blood product use and the complications of therapy that are used in the care of individuals with bleeding disorders are easily applied to the care of people with thrombophilia. Therefore, the HTC team is uniquely trained to provide consultative, medical, nursing, chronic disease management and psychosocial support services to patients and families with thrombotic disorders as well as those with congenital bleeding disorders.
Hemophilia Treatment Center at Phoenix Children’s Hospital
Dr. Christine Knoll, MD, Director 602-546-0920
Lori Wagner, FNP, MSN, Clinical Program Coordinator, 602-546-0168
Patricia Smith, RN, MSN, Adult Coordinator 602-546-0128 Becky Garcia, RN, BSN Pediatric Coordinator 602-546-0186
Michelle Elliott, LCSW, Social Worker 602-933-1865
Who we serve:
Children and adults with bleeding disorders
- Von Willebrand’s Disease
- Rare bleeding disorders
Children with clotting disorders
PCH main campus: 1919 E Thomas Rd, Phoenix, AZ 85016, Ph: 602-546-0920, Fax: 602-546-0276
In addition to our clinic located in Phoenix Children’s Hospital, we now have our East valley clinic available for clinic visits, radiology, and lab work and our West valley clinic available for lab work.
East Valley: 5131 E. Southern Ave, Mesa, AZ 85206; Ph: 480-833-5437
West Valley: 20325 N. 51st Ave., Suite 116, Glendale, AZ 85308; Ph: 623-972-5437
The PCH HTC is a multidisciplinary evaluation and treatment facility serving the people of Arizona who have bleeding disorders or thrombotic disease (known collectively as disorders of coagulation). The PCH HTC is one of two federally recognized comprehensive hemophilia centers in Arizona serving the majority of individuals and families with disorders of coagulation. Our center aids local medical providers in the care of individuals of all ages with blood disorders and their families. The program is funded by the Department of Health and Human Services – Maternal and Child Health Bureau, and the Centers for Disease Control and Prevention. The center is also supported by income received from patient care and by a federally sanctioned pharmacy program.
The purpose of HTCs is to prevent and reduce problems related to blood disorders by providing comprehensive care to persons with bleeding disorders, thrombosis, thrombophilia (clotting disorders), and other disorders of coagulation. The centers use multidisciplinary clinic teams and clinical, outreach, and educational programs. The care provided at HTCs has been shown to significantly decrease complications for persons with hemophilia. Mortality rates are 40% lower in persons who use HTCs than in those who do not, despite the fact that the more severely affected patients are the ones who typically visit these centers.1 HTCs place a premium on preventive care because of the difficulty and expense of treating complications of bleeding disorders, which can reduce the patients’ quality of life.
What can the Hemophilia Treatment Center at Phoenix Children’s Hospital do for you?
Depending on your condition, the PCH-HTC offers a variety of services. All patients have access to direct patient care, whether routine or emergent. Below is a summary of the services we provide:
- Care Coordination: The PCH-HTC is committed to working with patients and other healthcare providers throughout the state to serve Arizona’s bleeding disorders population.
- Comprehensive visits: Annual comprehensive visits are offered to our moderate and severe hemophilia patients as well as our severe von Willebrand’s patients. Bi-annual Comprehensive visits are offered to our mild hemophilia patients every two years. At these visits patients will be evaluated by a hematologist, physical therapist, social worker, research nurse, and a nurse who specializes in bleeding disorders as well as have lab work done.
- We will provide surgery plans for patients who need a surgical procedure. We gladly take referrals to our center and, based on the benefits of receiving care at an HTC,1 we encourage providers to involve the HTC in the overall care of persons with bleeding disorders and their families.
- We will provide referrals to pain specialists, hepatologists, OB/GYNs, infectious disease specialists, primary care providers, orthopedic surgeons, and others depending on the specific needs of each patient.
- Education: The Hemophilia Center staff is committed to obtaining and providing the most up-to-date, individualized, in-depth information to our patients, families and community healthcare providers.
- Psychosocial programs: Psychosocial support in the medical setting helps individuals gain a personal understanding of hemophilia. The social worker provides psychosocial support by helping patients and their families develop strategies to cope with physical, mental, emotional, and social challenges related to having a coagulation disorder. This includes providing education, individual and family counseling, access to resources including insurance issues that patients and families may have, and community referral services.
- Research: We have a long-standing clinical trials program developed in partnership with national leaders in coagulation disorders to provide the most up-to-date treatments for our patients and families. Some of these affiliates include: the Centers for Disease Control and Prevention (CDC), the American Thrombosis and Hemostasis Network , Mountain States Regional Genetics Network, and Mountain States Regional Hemophilia Centers, in addition to partnerships with major pharmaceutical companies.
- Physical therapy: A physical therapist will assess muscle and joint range of motion and function at annual and semi-annual comprehensive visits for patients with severe bleeding disorders. Physical therapy services are also provided to improve range of motion, strength, and function as needed for acute, post surgical, and chronic conditions.
- Women’s needs: Our staff recognizes the special needs of women with bleeding disorders. We are currently developing a women’s clinic to diagnose and follow women and teenage girls experiencing abnormal menstruation.
- Our Public Health Service 340B HTC Pharmacy Program benefits payors and patients by reducing the cost of treatment. Program staff provide coordination of care, communicate with patients and their families to manage medication issues, and help patients enroll in assistance programs that allows them access to therapies during a lapse in insurance coverage.
- Genetic counseling: we provide genetic counseling and testing through the HTC for eligible individuals and families.
- Dental care: Our staff will work with you and your dentist to make sure all the necessary precautions are taken in preparing for dental procedures and for long-term dental care. A new dental program for adult bleeding disorder patients will be rolled out in the fall of 2010 in which qualifying individuals may receive reduced cost or free dental care through the Arizona School of Dentistry and Oral Health.
1 Soucie J, Nuss R, Evatt B, Abdelhak A, Cowan L, Hill H, et al. Mortality among males with hemophilia: relations with source of medical care. Blood 2000;96:437-442.
Below is a list of Resources that work with the inherited bleeding disorder community. The Arizona Hemophilia Association does not personally endorse the providers/resources. Please use each at your discretion.
National Medical Resources
Programs Sponsored by Pharmaceutical and Homecare Companies
The major factor manufacturers and homecare companies have programs in place to provide factor, sometimes at no cost, to hemophilia patients who are without insurance and who meet certain eligibility requirements. Below is information on some of the available programs.
Programs by Pharmaceuticals
- Bayer Reimbursement Helpline
www.kogenatefs.com click on Patients and Caregivers
- Baxter Reimbursement Support
- Grifols Reimbursement Department
- Novo Nordisk SevenSECURE Program
www.us.novoseven.com click on SevenSECURE
- Wyeth Reimbursement Information Line
- ZLB Behring AssuranceSM Program
www.cslbehring-us.com, click on Patients and Families
Programs by Homecare Companies
Advocating for Chronic Conditions, Entitlements and Social Services (A.C.C.E.S.S.)
The A.C.C.E.S.S. program assists persons with chronic medical illnesses, including hemophilia patients, with state and federal entitlement programs, eligibility for group health insurance under federal law (COBRA and HIPAA), and health insurance through state high-risk pools and other alternatives. The program is administered by Accredo Health, Incorporated and its affiliates, Hemophilia Health Services, Inc. and Accredo Therapeutics, Inc. For more information, visit http://www.accredotx.com/access/access.html or call (888) 700-7010.
Adult Services for Arizona
1. Arizona Pain Specialists
Phone: 480-563-6400 Fax: 480-563-8009
Scottsdale Office: 9787 N. 91st Street, Suite 101. Scottsdale, AZ 85258
Glendale Office: 18555 N 79th Ave, Suite E101. Glendale, AZ 85308
Chandler Office: 655 S Dobson A205. Chandler, AZ 85224
2. Ronald Burns, MD (Rochelle is AA)
6036 N 19th Ave, Ste 502 (19th Ave and Bethany Home Rd at Baptist Hospital)
Phoenix AZ 85015
Insurance taken:United, Aetna, BCBS, Health Net, Humana – PPO, TriCare, Beech Street, Cigna
AHCCCS Plans:APIPA – needs prior auth, Mercy Care – needs prior auth, Care First, Phoenix Health Plan, Maricopa County, Health Choice, Bridgeway
3. Angleo Chirban, MD
777 W. Southern AVE, Ste 501
Mesa, AZ 85201
(Does not take Cigna, Care First, Maricopa, Aetna)
Primary Care Providers
1. Good Samaritan Internal Medicine
925 East Mcdowell Road
Phoenix, AZ 85013
Ph: 602-839-2282 or 602-839-3927
2. Healthy Outlook (does not take AHCCCS)
Corner of Missouri and 19th Ave
1. Dr. Steven Brown
500 W. Thomas Rd, Suite 450 (5th Ave. and Thomas, use parking garage, pull ticket, they will validate)
(Delta, Aetna, Assurant, no HMO plans, no AHCCCS)
2. Dr. Feldhake – AHCCCS plans, Delta Dental
7725 N. 43rd Ave, Suite 711
3. Student Dental Clinics
a) ASDOH Dental Clinic, 5855 E. Still Circle Mesa, AZ 85206 480.248.8100
b) Dental Care West 20325 N 51st Ave., Unit 156 Glendale, AZ 85308 623.251.4700
4. Maricopa Medical Center Dental Clinics – Adults
Sliding scale; AHCCCS
Dr. Jack Buhrow
4202 N 32nd St, Suite A, Phoenix
John Raines, MD
AZ Otolaryngology Consultants
Paul J. Berggreen, MD
1300 N. 12th St, Ste 613
Phoenix, AZ 85006
Phone: (602) 254-5321
Dr. Felipe Gutierrez
Good Samaritan Hospital
602-250-0934 / 602-839-3350
On-call doc: 602-239-2606
Care Directions – Services for HIV positive clients
Dr. Ott and Dr. Worthington
Dr. Chilvers – ankle specialist
Tucson – University Medical Center
(520) 694-8000 Erica is coordinator
Dr. Paul Howard, MD
9097 E. Desert Cove Dr.
Scottsdale, AZ 85260
3104 E Indian School, Suite 200
Dr. Beth Purdy
Has offices in Glendale and Phoenix
Please call Scheduling at 602-512-8505
List of Doctors (Hemophilia and vWD
Dr. Harrison Bachrach 1432 S Dobson Rd Mesa, AZ 85202 Phone: 480 969-3637
Dr. Alison Stopeck 1515 N. Campbell Ave Tucson, AZ 85724 Phone: 520-626-2816
Dr. Jeffrey Isaacs Southwest Hematology Oncology 11209 N. Tatum Boulevard, Suite 260 Phoenix, AZ 85028 Phone: 602-494-6800
Dr. Henry Lee Hematology Oncology Associates 3330 North 2nd Street Phoenix, AZ 85012 Phone: 602-277-4868
Dr. Lanny Hecker Hematology Oncology Associates Phone: 480-860-2540 3330 North 2nd Street Phoenix, AZ 85012 and 10460 North 92nd Street, Scottsdale, AZ 85258-4548
Dr. Sanjah Shah Phoenix Children’s Hemophilia Treatment Center 1919 E. Thomas Rd., Bldg. B, Phoenix, AZ 85016 Phone: 602-546-0920
Lori Wagner, FNP Phoenix Children’s Hospital Phone: 602-546-0168
Dr. Brenda Wittman 1515 N. Campbell Ave Tucson, AZ 85724 Phone: 520-626-4851
Angela Tom, MS, FNP-C 1515 N. Campbell Ave Tucson, AZ 85724 Phone: 520-626-7556