Physicians at the Central Virginia Center for Coagulation Disorders travel throughout the state and nationally to present research findings on coagulation disorders.
Aging and HemophiliaFVIII Update
Hematology Fellows Presentation
HTC Social Workers’ Involvement with Local Bleeding Disorder Chapters
Psychosocial and Financial Implications of Obesity
von Willebrand Disease Presentation
Learning to successfully manage treatment of a bleeding disorder in the home environment is the goal for most patients and their families. Since home therapy for bleeding disorders usually means learning to administer a medication intravenously, this is an important step for many families. The advantages of learning home therapy often outweigh a family’s concerns about administering a medication. Families choose home therapy for many reasons:
Home infusion may stop bleeds sooner with less damage to the joint or tissue and less pain.
The time interval between recognizing that a bleed has occurred and treating the bleed may be a matter of minutes for the patient on home therapy. Coming to the emergency room or to the bleeding disorders clinic may add hours to this time interval. The sooner a bleed is stopped or prevented, the less pain and joint damage will happen.
Home therapy can enable the person with a bleeding disorder to lead a more “normal life.”
Treatment for a bleeding disorder can be planned as a part of a patient or family’s daily routine. Families generally feel as though they have more control over their condition and are less dependent upon medical services and schedules.
The cost of care, in general, dramatically decreases for the patient on home therapy.
The expense of home therapy is generally just the cost of medication and ancillary supplies (needles, syringes etc). Treatment of bleeds in the clinic or medical facility also incurs costs for physician and nursing time, facility fees and any additional lab work or diagnostic test completed. This is a cost saving to the patient and to the third-party payer.
Patients and families on home therapy always have the support of their medical team in assessing and treating bleeds.
Part of the training in home therapy is learning how to assess bleeds and when to call the treatment team. Sometimes bleeds are too serious to be treated at home. Other times, bleeds may not respond to treatment as expected. Occasionally, families simply have difficulty performing the venipuncture needed for infusions. Home therapy requires close collaboration between the team and the family.
Traveling is easier on home therapy.
Treating the patient or family member away from home without having to take him or her to the nearest center gives the family freedom. Having knowledge of the nearest center but the ability to manage minor bleeds while traveling gives peace of mind to the traveler.
Companies providing home therapy supplies can be another resource for families.
Many specialized pharmacies provide home therapy supplies that are delivered directly to the family’s home. Additionally they provide educational materials and support.
Deciding when to learn home therapy is a very individualized decision. Some parents are comfortable with learning new medical skills and want to start home infusing as soon as possible. Some children are more willing and interested than others in either learning to self-infuse or in having a parent or caregiver infuse them. Others need more time and support before they feel comfortable and competent in home therapy. All families need to have adequate education to be able to assess and understand how to dose and treat before considering home therapy.
Hemophilia Homecare Companies
Homecare companies are specialized pharmacies that provide services related to obtaining the factor and related medications/supplies needed at home for persons with bleeding and clotting disorders.
Accredo Hemophilia Services
201 Great Circle Road
Nashville, TN 37228
CVS Speciality (Caremark)
1127 Bryn Mar Drive
Redlands, CA 92374
American Homecare Federation, Inc. (AHF/Diplomat)
31 Moody Road
PO Box 985
Enfield, CT 06083
4115 Pleasant Valley Road, suite 200
Chantilly, VA 20151
10049 Lakeview Avenue
Lenexa, KS 66219
107 Smith Church Road, Suite A
Roanoke Rapids, NC 27870
10828 Kenwood Road
Cincinatti, OH 45242
Factor Support Network
900 Avenida Acaso, Suite A
Camarillo, VA 93012
15529 College Blvd.
Lenexa, KS, 66219
HPC Specialty Pharmacy
63 South Royal St., Suite 710
Mobile, AL 36602
MedPro Rx, Inc.
140 Northway Court
Raleigh, NC 27615
325 Rolling Oaks Drive, Suite 140A
Thousand Oaks, CA 91361
950 Calcon Hook Road, Suite 19
Sharon Hill, PA 19079
Insurance Directed Choices:
Aetna Specialty Pharmacy (Required for Aetna HMO plans)
503 Sunport Lane
Orlando, FL 32809
Phone: 1-866-782-2779 ext. 9431
Stat Fax: 1-855-665-0244
Coordinated Care Health (Required for some Optima plans)
Envision Specialty (Required for Va Premier)
7801 Freedome Avenue NW
North Canton, OH 44720
Propium Pharmacy (Required for some Optima plans)
Phone: 1-757-553-3568 or 1-855-553-3568
Fax: 1-757-819-7827 or 1-844-272-1501
Sentar Home Health (Required for some Optima plans)
Tel-Drug/Cigna Home Delivery (Required for Cigna plans)
AllianceRx Walgreens Prime (Required for BCBS FEP plans)
The Central Virginia Center for Coagulation Disorders recommends the following organizations and chapters for more information concerning coagulation disorders.
Region III Hemophilia Program
The HTCs in Region III affirm that all patients and families have the right to participate actively in their care, including choice of hemophilia treatment provider, treatment product, vendor of treatment products and home nursing services.
The VCU Hemophilia Treatment Center at the Children's Hospital of Richmond is committed to helping our patients make a smooth transition from pediatric to adult health care. This process involves working with youth, beginning at ages 12 to 14, and their families to prepare for the change from a pediatric model of care where parents make most decisions to an adult model of care where youth take full responsibility for decision making. This means that we will spend time during the visit with the teen without the parent present in order to assist them in setting health priorities and supporting them in becoming more independent with their own health care.
At age 18, youth legally become adults. We respect that many of our young adult patients choose to continue to involve their families in health care decisions. Only with the young adult's consent will we be able to discuss any personal health information with family members. If the youth has a condition that prevents him/her from making health care decisions, we encourage parents/caregivers to consider options for supported decision making.
We will collaborate with youth and families regarding the age for transferring to an adult provider and recommend that this transfer occur before age 22. We will assist with this transfer process, including helping to identify an adult provider, sending medical records, and communicating with the adult provider about the unique needs of our patients.
As always, if you have any questions or concerns, please feel free to contact us.
We recommend that all patients seen in the Bleeding Disorder Clinic have a Primary Care Provider (PCP) in addition to the specialty care provided through our clinic. Below are some answers to frequently asked questions about the role if the PCP and how to set up care.
Why do I need a PCP?
It is important to choose and visit a PCP to help manage your overall health, for the following reasons:
- Help you stay healthy by suggesting good diet and exercise choices that are best for you
- Schedule screening tests that are recommended at certain ages
- Take care of you when you are sick
- Refer you to a specialist when needed
- Prescribe medications when you need them
- Answer questions about your health
- Save you time and money when a health problem happens
How do I find a PCP?
- Start with your insurance to get a list of doctors that are in the network. You can do this by calling the phone number for “Member Services” on the back of your insurance card or through the “Provider Directory” listed on your plan website.
- Check with trusted family or friends to see if they have a PCP they would recommend.
- Consider things like where the doctor’s office is located and whether you can easily get to appointments. Some doctors may offer weekend and evening hours.
- Don’t wait until you are sick to make an appointment. Preventative visits (also known as “wellness” visits) help keep you healthy but also allows you and the doctor to get know each other better and keep up to date with any changes in your medical history.
What are the different types of PCPs?
A primary care provider is a physician who is a specialist in family medicine, internal medicine or pediatrics. Other providers such nurse practitioners and physician assistants also provide primary care in collaboration with primary care physicians. Some women consider their obstetrician or gynecologist (OB/GYN) to be their primary care doctor; however, women should clarify with their OB/GYN that they want them to do so as not all OB/GYNs serve in this role.