Addressing all angles of life with hemophilia
A national study proved that the comprehensive care provided at hemophilia treatment centers (HTCs) significantly reduces medical complications for people with hemophilia. There is a substantially lower incidence of ill health and early death in people who use HTCs than for those who do not. It also showed a decrease in bleeding-related hospitalizations.
The IHTC not only provides state-of-the-art medical care, we offer emotional support, research, school and work support, insurance consultation, outreach and education programs and much more.
Our expert team also works closely with healthcare providers in your local community to meet your specific needs and to improve your quality of life. IHTC’s focus is not only treating issues when they occur, we are keenly aware how to prevent many complications that can occur related to your bleeding disorder.
This combination of expert treatment and proactive prevention lead to improved health for all of our patients.
HEMOPHILIA TREATMENT CENTERS
A hemophilia treatment center (HTC) is a specialized center where all of the staff is specifically trained to support people with hemophilia. The Office of Maternal and Child Health and the Centers for Disease Control and Prevention (CDC) support a network of specialized healthcare centers dedicated to treating blood disorders. Currently, this network includes about 140 HTCs. These HTCs are federally recognized centers of excellence; their purpose being to prevent and reduce problems related to blood disorders by providing specialized, personalized, and comprehensive care. IHTC is the only federally recognized HTC in Indiana.
The IHTC is the largest HTC in the U.S., exceeds national staffing guidelines and offers an extensive spectrum of care through dedicated trained professionals. In addition to the core services provided at all HTCs throughout the country (eg, hematologists, clinical nurses, social workers, physical therapist), the IHTC staff also includes a career counselor, risk reduction specialists, a registered dietitian, clinical research professionals, genetic counselor, dental hygienist, child life specialist, psychologist and other experts.
Comprehensive care takes into consideration all of the ways your bleeding disorder affects everyday life. IHTC has a large number of experts and specialists who come together as a team to take care of every patient's individual health needs. We also hold specialty clinics to focus on specific aspects of your or your child's health. This is one of the unique advantages of getting your care at the IHTC.
Learn more about IHTC's Specialty Clinics
While the IHTC’s bleeding disorder patients have access to the IHTC multidisciplinary team every day, these patients are also provided a free, annual comprehensive clinic visit with the entire multidisciplinary team to evaluate their treatment plan and provide updated individualized recommendations from each multidisciplinary team member. This visit is focused on a complete evaluation of all aspects of your health and well-being. This is only the beginning of comprehensive care.
One month following the comprehensive clinic visit, the patient and their designated primary care physician receive the comprehensive report that includes a summary of their medical history and treatment or lifestyle recommendations from each multidisciplinary team member.
LEARN MORE ABOUT IHTC'S COMPREHENSIVE CARE CLINIC
Immune Tolerance Clinic
Once an inhibitor is detected, the patient may start immune tolerance therapy. The idea behind this is to infuse factor on a regular basis (sometimes as often as two times per day) so that the body will become familiar with the clotting factor and stop destroying it with antibodies. The frequency of clinic visits for individuals using immune tolerance therapy varies according to each patient’s situation. The focus of care during immune tolerance includes the following:
Review of current treatment
Evaluation of bleeding history
Discussion of infusion specifics such as the use of a central venous access device (CVAD)
Physical Therapy evaluation
Other members of the MDT based on individual needs
For early treatment of bleeding episodes and the best lifetime outcomes, hemophilia often requires patients to learn self-care at home. Self-care includes infusion of factor, proper factor storage, disposal of medical waste, ability to document your infusion, in addition to other items. You will actively participate with your IHTC doctor and Multidisciplinary team to design a treatment plan with the least barriers and best chances for success.
If you or your child has hemophilia, it is very important that you follow the instructions and treatment plan developed with the healthcare providers at IHTC. These guidelines are provided to minimize both the short-term and long-term complications of hemophilia. Your ability to follow your treatment plan directly impacts your health and minimizes the following:
- Life-threatening bleeding
- Pain related to bleeding
- Joint damage
- Missing life events such as school, work and social events.
IHTC has developed tools to help staff better understand issues that you or your child might be facing with the treatment. Understanding these barriers helps us partner with you on developing solutions to these issues. A tool commonly used in clinic is the Validated Hemophilia Regimen Treatment Adherence Scales, or VERITAS. This short survey is available to measure adherence (ability to complete prescribed treatment) to episodic (also called on-demand) treatment (VERITAS-PRN) or prophylactic treatment (VERITAS-Pro). IHTC staff will review your survey and suggest techniques to overcome any issues identified and set you up for success and best outcomes.
To help us help you, we also recommend that you or your child keep treatment records.
Treatment Records Help You Take Charge of Your Health Care
Treatment records (sometimes called infusion logs) help keep track of your treatments and any bleeds that you might have. This puts you in charge of your health care, and helps the IHTC provide the best care for you. Review of the treatment logs helps determine the following:
- Joints that are becoming a “target” of repeat bleeding
- Time/day when bleeding is commonly occurring such as after an active weekend
- Documents infusions for insurance purposes
- Treatment success on a specific dose and schedule
What is a treatment record? A treatment record or infusion log is a way to document or record bleeding episodes and treatment in an organized manner. This record or log makes it easier to discuss health issues with your healthcare provider when you or they have a concern. Regular review of your treatment record will assist with the identification of problems early so that a change in your treatment plan can be determined
Why do I need to keep a treatment record? Keeping a treatment record maintains an accurate record of your bleeding episodes and treatment over a period of time. Trying to recall bleeding events and treatment that has occurred over the past year is difficult and often inaccurate. Having accurate up-to-date information assists in the discussion and development of the best treatment plan for you or your child. Additionally, many insurance companies now require treatment records of every bleeding episode and infusion for continued coverage of factor concentrate.
What are my options? The IHTC currently has three main recording options available. We would be happy to discuss either of these options with you and your family.
- ATHNadvoy: This electronic treatment record system enables you to log bleeding events and treatments online through a computer. Learn more about ATHNadvoy and how to register for this service.
- Microhealth: This smart phone app gives you the flexibility to track and monitor bleeding events and treatments, and set reminders for infusions.
- Treatment calendar: This paper calendar is specifically designed by the IHTC team to document bleeding episodes and infusions in an easy format to follow. Download instructions on how to use the IHTC treatment calendar.
Is keeping a treatment record a requirement for my care? We recommend that everyone record their bleeding events and infusions to help the IHTC provide the best care possible. In addition, many insurance agencies now require these records.
What happens to the records when I send them to the IHTC? Your treatment records will become a part of your medical record and can be accessed and viewed by the IHTC staff, or requested by you when you need them. They remain confidential.
As Indiana’s only federally recognized HTC, we have a long track record of working with healthcare providers in your community to meet your medical needs. While it is important for you to attend the annual comprehensive clinic evaluation (either in Indianapolis or at an outreach location), day to day medical care can often be provided in your local community. We will work with your local primary care physician, dentist, physical therapist or other health care providers to ensure you receive state of the art care and support wherever you live. We are available to answer any questions you or your healthcare provider might have about hemophilia to ensure the best outcome for you or your child.
IHTC also partners with other specialists involved in the care of any of your other medical condition. We provide detailed surgery plans and postoperative management related to the control of bleeding for any patient who needs a surgical procedure. Our dental hygienists will work with your local dentist to develop a bleeding treatment plan if needed. IHTC frequently consults with other specialists to be sure medications they prescribe are safe to use and will not increase bleeding. We encourage all providers to involve the IHTC in the overall care for persons with hemophilia and their families.
One of the critical aspects of coordinating your or your child's care, whether at IHTC, through one of our outreach clinics, or in collaboration with your local health providers, is to make sure you have a current treatment plan in place. These plans are usually developed during a comprehensive clinic visit and include the ideal treatment product, infusion dose and schedule, and home infusion.
Planning for Surgeries & Dental Procedures
Good dental hygiene is important for all individuals, especially those with bleeding disorders. Seeing a dentist or dental hygienist on a regular basis may help prevent some costly dental procedures down the road. Individuals with bleeding disorders need to take some special precautions in preparing for dental procedures as well as in providing essential information to the dental care provider to ensure the best outcomes for both the procedure and long-term dental health.
LEARN MORE ABOUT DENTAL CARE AND BLEEDING DISORDERS
Patient & Family Support
IHTC is your and your family's partner and guide in managing the psychological aspect as well as the medical aspect of living with hemophilia or other bleeding conditions. The IHTC comprehensive care team also includes social workers, psychologists, and genetic counselors. IHTC recognizes that it is challenging to deal with a chronic condition like hemophilia, and has assembled a world-renowned team to support you and your family in every aspect relating to managing this condition, at every stage of life.
IHTC expert staff includes
- The child life specialist (CLS) assists your child in understanding what goes on in a clinic visit and helps reduce their concerns and increase their cooperation during the visits. She also provides age-appropriate suggestions for use at home for children on home treatment. The CLS also can help educate brothers, sisters and family members regarding bleeding disorders.
- The IHTC social work team is focused on the impact of a bleeding disorder on daily living. They work with families to identify barriers to care and develop strategies to overcome the identified barriers. They also provide recommendations for local community resources.
- The IHTC clinical psychologist assists the social work and medical teams by providing evaluation and intervention for psychological concerns. She also provides referral to community providers as needed.
- The IHTC genetic counselors are available to discuss with individuals and families the genetic aspects of hemophilia. This includes what genetic testing is available, what this information would provide, and how to access to this testing. Our genetic counselors can also look at your family tree with you to discuss the likelihood of passing the bleeding disorder on to children, and the chance that family members could have hemophilia or pass it on to their children.
The IHTC Pharmacy Program Recognizes the Power of Your Choice
As Indiana’s only federally recognized comprehensive hemophilia treatment center, the IHTC operates a Public Health Service Pharmacy Program (also known as a 340B program) for our eligible patients. Our pharmacy program allows the IHTC to dispense clotting factor at significantly reduced prices, saving you and your family money. We also assist with case coordination with your pharmacy insurance provider.
Importantly, by choosing the IHTC pharmacy program, you are also showing your support for Indiana’s only comprehensive care hemophilia treatment center.
Here are a few of the many ways in which the IHTC pharmacy program can help you and the bleeding disorders community:
- Reducing the cost of clotting factor: We are able to purchase discounted clotting factor for eligible patients. This saves you and your family money; makes your insurance coverage go further; and reduces the total cost to the healthcare system.
- Providing care management: The pharmacy staff meets daily with treatment center staff. This open communication allows us to know and address your needs on a day-to-day basis.
- Improving patient communication: Our experienced staff is available whenever you need them, 24 hours a day, 7 days a week, 365 days a year. We offer the full range of products and supplies to meet your needs. We also provide education materials and expert advice to allow you to make your own informed decision to suit your lifestyle and personal goals.
- Managing supplies and waste disposal: The IHTC pharmacy provides all clotting factor supplies and a specially developed sharps disposal program at no additional cost to you or your family.
- Providing patient assistance: The IHTC pharmacy program can help you resolve possible insurance issues; and we can help you bridge gaps in coverage by enrolling you in patient assistance programs. We are also knowledgeable in co-pay assistance programs that can help reduce some of the cost of your care.
- Free patient notification: The IHTC pharmacy program participates in a free, confidential, 24 hour communication system providing you with information on withdrawals and recalls of any factor products you or your child may be using. To find out how this system works and to register for this service, click here.
- You can contact the IHTC pharmacy program by telephone or fax:
- Telephone: (317) 829-7778 or (877) 633-4639 or (877)-MED-INDY
- Fax: (317) 829-7783
Getting the appropriate insurance coverage, and even selecting plans and understanding your benefits can sometimes be a difficult and confusing process. IHTC has Insurance Coordinators available to offer guidance and support. We are ready to help you with the following:
- Review of current insurance benefits
- Plan selection during yearly renewals
- Coverage issues, e.g., denials, co-pays, out-of pocket
- Applications for federal and state programs
- Children with Special Healthcare Needs
- Social Security/Disability
- Securing authorizations before having procedures
If you or your child has hemophilia, it is important to take measures to stay in good health. Many of these prevention strategies will be discussed during your comprehensive visit or additional office visits. The IHTC recommends that you or your child:
- Stay up-to-date on vaccinations
- Hepatitis A and B vaccinations and annual Flu vaccine are recommended
- Other vaccines may be recommended based on your individual situation
- Hepatitis screening as part of the comp evaluation
- Attend annual comprehensive clinic evaluations
- Additional clinic visits throughout the year may be recommended as part of your treatment plan for those on prophylaxis, immune tolerance or with additional health issues
- Avoid situations and high-risk activities that may cause bleeds
- Our physical therapy team can provide a list of high risk activities if you have questions
- Exercise regularly and maintain a healthy body weight
- Increased body weight can increase the stress on joints
- Identify and treat bleeds promptly, as directed by your IHTC hematologist
- Self-infusion training is available for those interested
- Maintain good oral hygiene (to prevent extensive dental procedures)
- The IHTC dental hygienist is a resource for your local dentist
- Participate in IHTC targeted initiatives either at comprehensive clinic or throughout the year
- Bone Health
- Persons with hemophilia many be at higher risk for reduced bone thickness and strength
- Vitamin D is an important nutrient for bone health
- IHTC monitors Vitamin D levels and provides treatment recommendations if your level is low
- A bone scan maybe recommended for those at risk for decreased bone density
- Point of Care Joint Ultrasound
- Point of Care (in clinic) Ultrasound is becoming very popular as a way to detect early joint changes related to bleeding episodes
- It is also helpful in examining active joint and muscle bleeds
- IHTC uses joint ultrasound as a tool for ongoing evaluation of joint status
- Cardiovascular Disease monitoring (CVD)
- It was previously thought that “thin blood” from hemophilia protected from heart disease
- Current research suggests that this is not always true
- The IHTC dietician will monitor laboratory markers for heart disease such as lipids and triglycerides, and provide recommendations for changes in your diet, if needed
- Weight and Body Mass Index (BMI)
- Maintaining a healthy body weight is important for your joint status
- The IHTC dietician will monitor your weight over time and provide diet counseling as needed
Outreach and community events
To provide comprehensive care to all Hoosiers with bleeding disorders, the Indiana Hemophilia & Thrombosis Center (IHTC) conducts a series of outreach comprehensive and specialty clinics throughout Indiana each year. Our outreach clinics allow us to provide care close to your home for added convenience. Even if you live a distance from our Indianapolis location, there are clinics close to your home which may meet your healthcare needs.
There is no charge to patients for the team’s evaluation at the IHTC’s outreach programs. However, patients or their insurers are responsible for costs associated with laboratory or imaging tests, like x-rays.
Learn more about IHTC’s outreach specialty clinics
IHTC also organizes other community outreach events throughout the state, in collaboration with the Hemophilia of Indiana (HoII). These may include educational programs or just fun parties for patients and their families to meet with other families in their community who are affected by bleeding disorders. They are also a chance to meet with IHTC staff and discuss issues or questions related to your/your child’s care.
IHTC is dedicated to your/your child’s well-being and partners with and supports your local providers to coordinate your care. This way you have access to IHTC's specialized services and programs, either at the center or through outreach clinics, as well as the general care from your local doctors and providers.