Thalassemia Treatment Center Profile: Children’s Healthcare of Atlanta (CHOA)
From left: Mica Loewy, LMSW, Maa-Ohui Quarmyne, MD, Jeanne Boudreaux, MD, and Laurie Thomas, RN
May 2, 2018 – CAF is pleased to launch a new series of profiles on Thalassemia Treatment Centers in the United States with the aim of familiarizing the thalassemia community with services offered at these institutions as well as members of hospital staff. To coincide with this year’s CAF Patient Family Conference, which is taking place in Atlanta this July, this series begins with a focus on the Comprehensive Thalassemia Center of Children’s Healthcare of Atlanta (CHOA). Special thanks goes to CHOA team members Jeanne Boudreaux, MD, Maa-Ohui Quarmyne, MD, Laurie Thomas, RN, and Mica Loewy, LMSW, for sharing their insights on CHOA, comprehensive care evaluations, and transitioning to adult care through their following interviews with CAF.
Interview with Jeanne Boudreaux, MD
Dr. Boudreaux is a pediatric hematologist/oncologist who serves as the Medical Director of the Aflac Cancer and Blood Disorders Center of CHOA, and also serves as the Director of the Comprehensive Thalassemia Center of CHOA.
CAF: When was your Thalassemia Center first established? What was the motivation to set it up?
Dr. Boudreaux: 2004. Our hospital system Children’s Healthcare of Atlanta was established with the merger of 2 Children’s hospitals in 2000. In the early years we started looking at how we could consolidate the treatment of some of the rare disorders at one location to improve patient care.
CAF: How many thalassemia patients in total are currently treated at your center, for either ongoing care or for annual comprehensive examination?
Dr. Boudreaux: We have 27 transfused in our center, 53 pediatric and adult pts w TDT and 35 pediatric and adult pts w NTDT
CAF: What kinds of tests are performed at your center during comprehensive care examinations?
Dr. Boudreaux: Tests and scans are age dependent. We can perform all of the labs that are considered standard of care. We also have noninvasive MRI Ferriscan for both the liver and heart.
CAF: Which specialists and services are available in your specialty center?
Dr. Boudreaux: In our practice we have 2 hematologists, 3 nurses and a social worker who care our patients. In addition, our division employs our own endocrinologists, psychologists, genetics counselor, fertility counselors and a Bone Marrow Transplant/Gene Therapy team. We also have child life, music therapy and chaplaincy services. We have easy access to Cardiology and dieticians provided by our hospital system when needed.
CAF: Why is it important for patients to undergo regular comprehensive care examinations with highly experienced thalassemia physicians?
Dr. Boudreaux: Thalassemia is a lifelong rare disease that affects multiple systems and no two patients are alike. Providers who take care of a large group of patients have gained the necessary experience in managing the unique complications. And through Cooley’s and previous research alliances, the providers at the various centers know each other and can consult each other.
Jeanne Boudreaux, MD, and Laurie Thomas, RN with patient
CAF: How often do you recommend that patients undergo a comprehensive care examination? Does this vary depending on a patient’s health status or diagnosis?
Dr. Boudreaux: Transfusion Dependent (thalassemia major) patients should undergo a comprehensive visit once a year. Some patients may require visits more often.
CAF: What do you say to non-transfusion-dependent thalassemia patients who feel that they do not need to undergo regular comprehensive care evaluation?
Dr. Boudreaux: NTDT patients have their own unique challenges and potential complications. Management is often not as straightforward as it is with TDT. Expert care is really important in this group of patients.
CAF: After performing a comprehensive care exam, do you share your findings and any recommended changes in care with the patient’s local provider? How often are you typically in communication with a patient’s local provider?
Dr. Boudreaux: We provide a letter with our recommendations after every comprehensive visit. In the interim if questions arise, either the patient or the provider can contact us for advice.
CAF: Since the CAF Patient-Family Conference will be taking place in Atlanta this year, will you be offering annual comprehensive care clinics for patients who are visiting from out-of-town? If so, what days will these clinics be offered? Should patients contact Laurie Thomas if they’d like to schedule an appointment to attend one of these clinics?
Dr. Boudreaux: Out of state patients previously seen in our practice can be seen by either me (Dr. Boudreaux) on Friday or Dr. Quarmyne on Monday. In addition, we will have a few slots open for new patients.
CAF: At what age are patients transitioned out of your center to an adult thalassemia provider?
Dr. Boudreaux: We transition patients at 21 to adult hematology providers for transfusions
CAF: Adult patients are still seen at your center for comprehensive care evaluations, is that correct?
Dr. Boudreaux: We continue to see adults 21 and older for comprehensive/consultative exams. We schedule scans for those patients if they do not have access to MRI Ferriscan at their local institutions or nearby. We make recommendations for laboratory testing to their adult hematologist
CAF: What do you find most rewarding about working in the field of thalassemia?
Dr. Boudreaux: The most rewarding thing is to watch the pediatric patients grow into young adults and succeed in life while successfully managing their disease. It is not an easy task.
CAF: What do you see as the greatest needs of thalassemia patients at the current time?
Dr. Boudreaux: I look forward to the day when “I can be put out of business”, when a cure for this disease that is available for all patients. Until that day, there needs to be continued efforts to make disease management easier and safer. Chelation adherence is the biggest challenge and the reasons are multifactorial. Sustained motivation to take a medicine everyday (sometimes multiple times a day) when you won’t feel any different if you don’t is a huge issue, especially in teens and young adults.
CAF: How has the field of thalassemia changed within the last decade?
Dr. Boudreaux: There have been 3 big changes. Noninvasive measurement of Iron overload has become more accessible. More choices for chelation have been approved. Lastly, there is a real focus in developing treatments that can eliminate the need for transfusions (a significant reduction in the need for chelation). Alternative transplant options (MUD, Haplo) and gene therapy are examples.
CAF: What new developments do you expect to see within the field in the next 5 years?
Dr. Boudreaux: The various methods of gene modification that are currently in trials or are entering trials this year are very promising.
Interview with Maa-Ohui Quarmyne, MD
Dr. Quarmyne is a pediatric hematologist/oncologist who serves at the Aflac Cancer and Blood Disorders Center of CHOA, as well as the Comprehensive Thalassemia Center of CHOA.
CAF: How do you try to prepare patients for the transition to adult care? What do you do to make the transition process less stressful for patients who may be leaving their lifelong medical center – which included a full set of thalassemia experts and accompanying services – to transfer to a single, new provider?
Dr. Quarmyne: I start to talk about the transition process in teenage years. At age 18Y, I start asking families to actively seek out adult hematologists and make recommendations based on our own experience with our transitioned patients.
We offer to see patients who have been transitioned once a year for ferriscans and comprehensive thalassemia care so they are reassured that we can continue to be part of their care. We make recommendations to the adult hematologist at these annual visits
CAF: Why is it important for patients to undergo regular comprehensive care examinations with highly experienced thalassemia physicians?
Dr. Quarmyne: Transfusion dependent thalassemia is uncommon in the US and patients with thalassemia have their own unique needs which are not necessarily applicable to other transfusion dependent disorders or hemoglobinopathies. It is therefore important to see provider who has expertise in thalassemia to make sure that these unique needs are evaluated.
CAF: What do you say to non-transfusion-dependent thalassemia patients who feel that they do not need to undergo regular comprehensive care evaluation?
Dr. Quarmyne: We are learning that patients with non-transfusion dependent anemia do develop iron overload with its attendant problems even when they have never been transfused. Patients with NTDT also have higher risks of needing transfusions during certain time periods such as pregnancy and adolescent growth spurts. Lifelong chronic anemia can also have end organ effects. These are just a number of reasons why it is important for NTDT to continue to undergo comprehensive care.
CAF: What are some of the latest developments at your Thalassemia Center?
Dr. Quarmyne: We will be having a thalassemia patient/family camp this Fall and are looking forward to interacting with our families in that setting and facilitating the building of a community for our families. We are in the process of opening up a gene therapy trial and are excited about that.
CAF: Which features of your Thalassemia Center do you think are most valuable to patients?
Dr. Quarmyne: We have a great team of providers, a social worker, child life, office staff, etc. who genuinely care about the well-being of our patients and are knowledgeable about management of thalassemia.
CAF: What do you find most rewarding about working in the field of thalassemia?
Dr. Quarmyne: It is rewarding to see patients growing up successfully, thriving, achieving their independent family/carrier goals and maintaining good quality of life. This was not the case with thalassemia some decades ago.
CAF: What do you see as the greatest needs of thalassemia patients at the current time?
Dr. Quarmyne: Curative options (BMT/Gene therapy) with less potential for side effects
CAF: How has the field of thalassemia changed within the last decade?
Dr. Quarmyne: I am particularly impressed with the strides made with gene therapy as it offers each patient the potential for cure, without the need for a matched donor
Chelation options that hopefully have longer half-lives and can thus be dosed less frequently, and with less side effects. Compliance with chelation remains a problem for some patients and simplifying the treatment of that would improve quality of life.
CAF: What new developments do you expect to see within the field in the next 5 years?
Dr. Quarmyne: Safer, more effective gene therapy methods & outcomes.
Interview with Laurie Thomas, RN
Laurie Thomas is a registered nurse at CHOA.
CAF: How do you try to prepare patients for the transition to adult care? What do you do to make the transition process less stressful for patients who may be leaving their lifelong medical center – which included a full set of thalassemia experts and accompanying services – to transfer to a single, new provider?
Thomas: We have a handful of adult providers that are used to taking our thal patients and who will be amenable to Dr. Boudreaux’s and Dr. Quarmyne’s recommendations for care. Dr. Boudreaux will see adults at least 1-2 times a year so it is not like we are cutting them off completely. We generally start the transition process around the time they turn 20. We can see patients till they are 21. The patients have a visit to meet the adult provider before their transfusion is due at the new center.
CAF: If an out-of-state patient calls their insurance company and is told that they will not be covered for an annual comprehensive care exam at your Thalassemia Center, how do you recommend that the patient proceed to appeal the insurance company’s decision?
Thomas: We have an appeal letter we can send to the family that they can submit to their insurance carrier. Dr. Boudreaux is the only thalassemia specialist in the southeast United States so generally insurance companies approve the visit.
CAF: How often are patients successful in appealing an insurance company’s initial denial of their visit to your center for a comprehensive care evaluation?
Thomas: 9 times out 10 it is approved. Being approved however usually does not mean there is no cost for the visit. There is still some expense associated with the visit. Generally, we will not do ferriscans here unless approved by the insurance company. If there is no ferriscan facility near the patient’s home, they will generally approve it to be done here. If the patient’s home center has a ferriscan then the patient usually gets it there.
CAF: What do you say to patients who are afraid that their local provider will not like it if they visit another center for a comprehensive care examination?
Thomas: We really stress the importance of parents advocating for their children’s needs at their local centers. The great majority of local hematologists, who have limited experience with the thalassemia population, welcome all the suggestions we can give. We don’t have too many parents who are afraid of offending the local doctor! Most parents are well versed on Cooley’s standards of care and will point out to the local providers if they are doing something not up to the standard. If they get push back from the local doctors, they contact Dr. Boudreaux to ask her opinion.
CAF: Which states do patients come from to obtain comprehensive care evaluations at your center? Does your center treat any international patients with thalassemia?
Thomas: We have no international patients but we see patients mostly from the southeast states–Florida, Alabama, Louisiana, Tennessee, South Carolina, North Carolina, Virginia. But we also see patients from up north as well–Ohio and Michigan.
CAF: Which aspects of your Thalassemia Center do patients/families seem to like best?
Thomas: I think they really appreciate the open communication at our center and that they can email me anytime if they have questions or if they want Dr. Boudreaux to give her opinion on just about any question they have. She is willing to communicate directly with the doctors as well, either by phone or email. She sends detailed clinic notes to the local providers on her recommendations for transfusion and chelation.
CAF: What are some of the latest developments at your Thalassemia Center?
Thomas: We recently opened a Day Hospital for infusions that is open later into the evening. This allows patients to schedule transfusions later in the day so they don’t miss as much school and work. We are coordinating a thalassemia family camp which we hope to offer on a yearly basis where patients and their families can enjoy a weekend away socializing and participating in camp activities with other thalassemia families and center personnel. We host yearly thalassemia workshops for parents, discussing a variety of topics on everything from blood safety to bone marrow transplant to managing chelation.
CAF: What do you find most rewarding about working in the field of thalassemia?
Thomas: We develop a close bond with many of these families. It is very rewarding to be able to educate and help families manage their child’s complex care. It is rewarding to watch a young adult, whom you have cared for since childhood, “graduate” to the adult world and successfully take ownership of their disease and manage their lives successfully.
CAF: What do you see as the greatest needs of thalassemia patients at the current time?
Thomas: I think navigating the world of insurance is getting harder. Insurance companies are wanting to dictate care and imposing seemingly arbitrary rules about which chelators should be prescribed.
Interview with Mica Loewy, LMSW
Mica Loewy is a social worker who works with patients at the Aflac Cancer Center of the CHOA, as well as the Comprehensive Thalassemia Center of CHOA.
CAF: What kind of resources do you offer to help long-distance patients defray the travel costs associated with a visit to your center (e.g. airline tickets from Southwest Airlines, low-cost accommodations at a local Ronald McDonald house for overnight stays, etc.)?
Loewy: When families need to travel to the Children’s Healthcare of Atlanta, we are often able to utilize the Southwest Voucher program. This is a program with Southwest that helps families fly for free when a child is seeking medical care. As far as lodging, we have a lovely Ronald McDonald House nearby that I refer families to as well. Our families will need to complete background checks in order to stay there and there is also no guarantee that there will be space. We also provide families with a list of hotels in the area that often times are able to provide a hospital rate.
CAF: What are some of the unique psychosocial needs of pediatric patients who have been adopted from China (e.g., attachment/abandonment issues, food hoarding, etc.)? How do you assist patients with these issues?
Loewy: We have many families in the Atlanta area who have adopted children with thalassemia from China. For these families, they often times collaborate with outside psychologists or school supports in helping a child adjust to their new setting. We also offer psychology supports and neuropsychology testing as well. When these patients are seen in the clinic we make sure to have our child life specialists work with the patients to help prepare them for their transfusions and provide education. This can be tricky depending on the language barriers so it is helpful when our child life specialists use interactive methods for our patients to be able to learn about their diagnosis. Our goal is to make sure the patient has information about their diagnosis and treatment to help relieve any anxiety they may be experiencing.
CAF: What are the biggest psychosocial needs of your teenage patients? How do you assist patients who are struggling with these issues?
Loewy: A large stress for our teenage parents is compliance. This is a time where teenagers are asserting their independence. As a team, we try to work directly with the patient acknowledging that their parents will not always be there as a reminder to take medication. We especially like to work on this before our patients begin college. We try to empower them to take control of managing their health care and assist with problem solving in helping our teens create systems that work for them in ensuring that they are able to take their medication and also schedule their appointments for their transfusions.
CAF: Do your thalassemia patients attend any summer camps? How have these been helpful for them?
Loewy: While we don’t have a sleep away camp at this time for our patients, we will be having a ThalPal family camp coming up this September 2018. We are hoping to have most of our Thal families in the area and in nearby states attend. This is also a wonderful opportunity for siblings to be involved. I look forward to seeing our patients have the opportunity to connect with other patients outside of a medical setting.
CAF: Which aspects of your Thalassemia Center do patients/families seem to like best?
Loewy: I believe the patients and families we treat feel very comfortable coming to CHOA. There is a sense of family within the Thal team. Because these patients are cared for here for so long, it provides the families with the opportunity to really engage with all of the staff. Our thalassemia children always know all of the nurses and all of the secrets of the play areas in clinic. There is also a sense of community among the parents. Many of the adoptive parents have been able to connect which is helpful the children and the parents. I feel fortunate to be able to connect some of the newer families with my veteran families to help guide them as well.
CAF: Do you have any advice for parents trying to raise well-adjusted children with thalassemia?
Loewy: In working with patients with Thalassemia it is very clear that our patients are not defined by their diagnosis. It is important for parents to remember this as well. I encourage families to connect with other Thal families to build connections and to be feel less isolated. It can be overwhelming at times, and having others in similar situations is often times very helpful. I also encourage families to reach out their family support staff. While our patients come to clinic regularly it is impossible for a social worker to know if a family has a need. It is essential that parents and patient communicate openly and honestly with both their physician but also the family support staff.
CAF: What do you find most rewarding about working in the field of thalassemia?
Loewy: I enjoy all of the wonderful parents and patients I connect with on a daily basis. We have the opportunity to have long relationships with our patients and to watch them grow up. Our patients are so resilient and cope with challenges that come their way. I see how devoted parents are to their children’s both physical and emotional well-being. Our parents are forced to have to navigate the insurance world and many other challenging healthcare systems in order to make sure their children are well cared for. Our parents take off work for infusions and doctor’s appointments and never complain. I feel so lucky to be able to be part of this journey with all of our Thal families.