Planning and Preparation

Transcription

1 This section outlines some of the steps you will need to take in planning for your stem cell transplant. Pre-transplant testing Your transplant clinical coordinator will schedule all your required pre-transplant testing. This testing is usually done at DFCI, but can be done through your local doctor s office. The amount of testing depends primarily on two factors: 1. Requirements established by your insurance carrier: Most insurance carriers request specific labs, pulmonary function tests, EKG, chest x-ray, RVG and/or echocardiogram. These tests must be fairly current. Some insurance carriers may request even more extensive testing, while others require only a letter of medical necessity from your transplant physician. 2. Your transplant admission date: All testing needs to be within 42 days of your transplant admission date. There may also be specific testing requirements if you have elected to participate on a protocol. Due to these specific requirements, in many cases the patient can expect to repeat testing as they go through both the insurance approval process and pre-transplant regulatory requirements. Preparing for admission There are a number of things that you can do to help prepare yourself for your stem cell transplant. This section will review guidelines for your nutrition, exercise and dental care, in addition to other ways that you can prepare for your stem cell transplant. If you are a smoker, we recommend that you stop smoking as soon as you begin considering bone marrow/stem cell transplantation (including marijuana which poses a fungus risk). It is important that you tell your doctor about any previous smoking habits. We also recommend that you DO NOT take aspirin or medications that contain aspirin or other non-steroidal anti-inflammatory medications (e.g., NSAIDS such as ibuprofen) for one week before your admission, as they will interfere with platelet function. Do not drink any alcohol (including beer and wine) for approximately two weeks prior to admission. This is important because alcohol interferes with the liver s ability to process chemotherapy in your body. We will ask you to trim your fingernails and toenails prior to admission since you will not be able to do so during your hospital stay. If you wear nail polish, it should be removed. Section 4 Page 1

2 Selecting a caregiver It is important that you have at least one family member or friend who can fill the role of caregiver. This person will provide you with emotional and physical support throughout the course of your stem cell transplant. Your caregiver should come with you on all of your appointments and can help you by: updating your family/friends on your treatment and well-being keeping track of your symptoms collecting information and taking notes during your appointments recording and refilling your medications being available to assist you with post transplant recovery preparing list of questions for staff and reviewing the responses with you after your visit overseeing visitors. Section 4 Page 2

3 Housing Arrangements As you prepare for your stem cell transplant, it is important that you coordinate housing for your family and/or caregivers who may be staying in Boston during your admission. Housing in Boston and the Longwood Medical Area ( LMA ) is limited, so it will be helpful to speak with one of our resource specialists to learn about housing options. Because of infection risks, families cannot stay overnight with you while you are in the hospital. You should contact a resource specialist as soon as it becomes clear that you will be receiving your transplant at DF/BWCC. Most housing options are time sensitive and the sooner you discuss your housing needs with a resource specialist, the greater the chance of finding accommodations that meet your needs. You may also need to stay in the local area for your follow-up care after transplant. Please call the resource specialist you have been referred to as soon as possible. Because it takes time to coordinate and/or get approval, it is in your best interest to begin researching your housing needs and options with as much lead-time or advance notice as possible. You can contact a resource specialist by calling (617) Housing options coordinated by the resource specialist for a patient or family member include: Group Houses: Group houses are arranged for by reservation and often have a waiting list. These houses are for patients and families needing to stay in the area for up to 8 weeks. Hotels: Area hotels provide both regular rooms and apartment suites at medical rates to our patients and their families. Hospitality Homes: This program works with all Boston area hospitals. Hosts live throughout greater Boston and have opened their homes to the family members of patients. Some patients may be considered for housing on a case-by-case basis. There is no cost, but a donation to the program is requested. Apartments/corporate housing: Various apartment complexes in the greater Boston area offer furnished apartments for short-term stays. Housing options in Boston can be expensive. To help with this expense, some patients have insurance that will cover all or part of housing that is medically necessary. You should contact your insurance company or benefits department at your employer to see if you have this benefit. It is important to share your housing budget and cost expectations with a resource specialist. Section 4 Page 3

4 Financial Matters/Access Management In preparing for your stem cell transplant, you will also need to address the financial aspect of your care. It is important that you understand what kind of health care/insurance plan you have and what services are covered under your plan. The department that provides support in this area is called Access Management. The transplant financial counselors are experienced in helping you plan for payment of your transplant and other related services. Although it is your responsibility for making sure that payment is made, we can help you sort through the details and steps needed to make your financial arrangements go smoothly. Stem cell transplant costs The stem cell transplant procedure and the related services that are provided as part of your care can be very expensive. Coverage involves inpatient (hospital) and pre- and post-transplant outpatient care, as well as all related tests, prescriptions and, for allogeneic transplant patients, donor-related costs. In addition to the cost of the transplant procedure itself, you may also have expenses for travel, lodging, meals, phone calls, and childcare. Billing for your stem cell transplant care and services can be complicated. Please remember that we are available to answer any of your questions, and will work with you to help resolve any billing or payment issues that may arise. Role of financial counselor A part of your care team, your financial counselor will be the link between you and your insurance company. He or she will verify insurance coverage and provide the appropriate information that is required to obtain approval for your transplant. Approval may be required at multiple stages through the course of your care. Some insurance companies assign a case manager to review the clinical details of your case with a medical director to see if you are approved for coverage. In this instance, your financial counselor will work directly with the case manager. The financial counselor will give you information about the status of your insurance claim. He or she will let you know when coverage for your transplant is approved. If your insurance company denies coverage, the counselor can help you with an appeals process. You can contact a financial counselor by calling (617) Understanding your health insurance Coverage for your stem cell transplant will vary based on the type of plan and the benefits offered by your insurance provider. In addition, some plans may require that you get prior approval before seeking care, or at each step of the transplant process. Section 4 Page 4

5 Coverage for medications Medications taken after transplant are expensive. Please talk to your health insurance provider about your medication benefit it is important that you know what is and is not covered by your current pharmaceutical policy. The financial counselor can also help you find out what services are covered by your pharmacy insurance benefit. It will be important to ask specifically about transplant medications and whether there is a cap or limit on the amount of coverage provided, a co-payment, and/or a deductible. Please let your care team know if you have concerns about your coverage, as it is very important to have the medications you need after you receive your stem cell transplant. Summary of insurance guidelines based on the type of coverage: HMO: Patients insured by Health Maintenance Organizations (HMOs) will most likely need prior approval for outpatient services with the transplant physician. Please be sure to have the prior approval from your primary care physician, company, or employer. Some insurers will not review for transplant approval without this in place. HMOs will only allow patients to be seen by physicians in their network. Without the required approval, the full responsibility of payment becomes yours. PPO and POS plans: Patients insured by a Preferred Provider Organization (PPO) or a Point-of-Service (POS) plan can decide whether to use in network or non-network providers. Your cost will depend on whether you choose to use a network or nonnetwork provider. Check to see whether the DF/BWCC program is considered a participating network provider. Transplant patients who choose to go out of network can face sizable co-payments and deductibles. Your financial counselor will help you determine the deductible and co-payment information based on the provider network of your insurance plan. Indemnity Insurance: Indemnity insurances typically cover a percentage of the patient s care, with the remaining balance being the patient s responsibility. For example, many plans use an 80%/20% split, so a patient s financial responsibility can be significant. The financial counselors may be able to direct patients to assistance. Medicare Part A: The Hospital Insurance program covers hospital and related post hospital services. Medicare has guidelines that determine which diagnoses are covered for transplant. MEDICARE DOES NOT PAY FOR MEDICATIONS. The transplant financial counselor will inform the patient if coverage is an issue. In some cases, secondary insurance plans, or Medigap policies, may cover if Medicare does not. Medicare Part B: This medical insurance program covers physician outpatient visits and treatments. Medicare has guidelines that determine which diagnoses are covered for transplant. MEDICARE DOES NOT PAY FOR MEDICATIONS. The financial counselors will inform the patient if coverage is an issue. In rare cases, secondary insurance plans may cover if Medicare does not. Medicare Part D: The Pharmacy Insurance program covers some prescriptions. Medicare has guidelines that determine which prescriptions are covered for Section 4 Page 5

6 transplant. MEDICARE PROGRAM MAY NOT PAY FOR SPECIFIC MEDICATIONS. The financial counselors or patient care coordinators will inform the patient if coverage is an issue. In some cases, if another prescription benefit is available, they may reimburse transplant prescriptions. Medicaid: Medicaid is a government-sponsored health insurance. Covered services are determined by the patient s particular plan. Eligibility is verified for all visits. All plans require prior authorization for transplants, regardless of insurance types. The financial counselors work with physicians offices, insurance companies, and patients to obtain authorization for services. Self-Pay If you do not have insurance coverage, your financial counselor will work with you to review payment options for transplant. Free Care and Public Assistance Availability If you do not have health insurance, you are a Massachusetts resident, and you meet the financial eligibility criteria, you will be encouraged to apply for Medicaid and Massachusetts Free Care. Patients that do not meet the criteria will be responsible for the cost of transplant. The transplant financial counselor will work with you on the deposit requirements and payment arrangements. Please keep in mind that Massachusetts Free Care covers the acute hospitalization at BWH and outpatient services at Dana-Farber. Massachusetts Free Care does NOT include the cost of post-hospital skilled nursing facilities or home infusion and IV therapy. You can apply for Massachusetts Free Care at any facility within the state of Massachusetts and that approval will be honored at both BWH and Dana-Farber. You will need to apply for Massachusetts Free Care at both BWH and Dana-Farber. Coverage for research protocols/clinical trials You may be selected to participate in a research protocol or clinical trial as part of your stem cell transplant. Some insurance companies view clinical trials or research protocols as experimental treatment and will not provide coverage. Others may provide coverage for certain costs only. Taking part in protocols or clinical trials may lead to added costs to you or your insurance company. Insurance coverage for medically-related services, as well as research protocols/clinical trials, varies from insurer to insurer. The financial counselor will help you find out what services are covered by your health insurance plan. In addition, some states have passed laws about insurance coverage for clinical trials, while others are now considering legislation to cover research studies. The types of clinical trials and coverage by these laws can vary from state to state. You should check with your state capitol to learn the details of clinical trial coverage available to you. Section 4 Page 6

7 Insurance Guidelines Hospital Claim Forms (insurance forms): If your insurance company requires a completed Hospital Claim Form, please obtain one from your employer or insurance company as soon as possible. Bring the form and your insurance cards with you to your first appointment. If you have health coverage with more than one insurance company, be sure to bring all appropriate forms and cards. Coverage for Inpatient and Outpatient Services: Your insurance company, employer, or health maintenance organization (HMO) may require that you have approval before you receive any care (outpatient or inpatient services). Prior approval means that the insurer (or payer) agrees to cover payment before the treatment or service is provided to you. In most cases, the major phases or services that require authorization are evaluation, donor search (if needed), and inpatient admission. Insurance approval for one phase or service does not guarantee approval for the others. Please be sure that you have this approval from your company, employer, or primary physician before you receive care or services. Without the required approval, the full responsibility of payment becomes yours. Your financial counselor is available to help you work through the approval process. Note: Approval of insurance coverage is needed before an admission date for transplant can be scheduled. Additional resources available to you National Marrow Donor Program (NMDP) Office of Patient Advocacy (OPA) (888) , Blood & Marrow Transplant Information Network (BMT InfoNet) (888) , National Foundation for Transplants (800) , Patient Advocate Foundation (PAF) (800) , National Transplant Assistance Fund (800) , Section 4 Page 7

8 Dental Screening Preparation for transplant It is very important that you see a dentist as soon as possible before your admission and that your oral health needs are taken care of before you have your stem cell transplant. This includes having your teeth cleaned and any fillings taken care of by your current dentist. If you do not have a dentist, please ask someone (friends, neighbors) to recommend one for you in your community. Otherwise, you may also look for a dentist in your area by checking The dental practice at BWH generally only sees patients who have medical issues that require them to be treated by the hospital (e.g., very low platelet counts). If you are such a patient, your clinical nurse specialist will arrange for you to be seen here. Your local dentist will need to complete the forms included in the folder pocket of this section and return them to us in the envelope provided. Your dentist can call the BWH dental clinic at (617) with any questions. A BWH oral medicine specialist will review your dental evaluation and the x-rays that are sent by your local dentist and communicate with your dentist to make sure your treatment plan is appropriate for you. Please note that pre-admission dental work may not be covered as part of the stem cell transplant. You should use your existing dental coverage (if available) or check with your health insurer or financial counselor to determine whether pre-admission dental screening and treatment (necessary for the transplant) is covered. The dental team and your hospital stay The conditioning you receive before your stem cell transplant may cause mouth complications as a result of neutropenia (low white cell counts) and as a side effect of chemotherapy. These include mouth sores (which can serve as entry points for many oral bacteria), mouth dryness, yeast infection, and possible viral infections. Low white cell counts may also cause chronic dental infections that have not bothered you before to flare up. The severity of these problems varies among patients. The dental team has developed a mouth care plan for you to follow when your blood counts are low. This will decrease the risk of gum bleeding and trauma to the gums, and will lower risk of mouth infections. Someone from the dental team will visit you once or twice a week while you are in the hospital to ensure that any mouth concerns are handled quickly. The oral medicine specialists at the Division of Oral Medicine and Dentistry are available to you after you are discharged from the hospital for transplant-related problems. This is especially important for patients who receive stem cells from a donor (through allogeneic transplant) and may be at risk for chronic graft-versus-host disease (GVHD). Section 4 Page 8

9 Pre-Admission Testing Before your hospital admission you will undergo a pre-transplant evaluation. This includes a series of tests to check your organ function and confirm your eligibility for stem cell transplantation. The tests may consist of: blood work CT scan, chest x-ray bone marrow biopsy heart studies (EKG, echocardiogram, MUGA) pulmonary function tests liver and kidney function tests These tests may be performed locally or with your transplant physician. Your transplant physician and program nurse will outline your options depending on your situation. Your transplant coordinator will help make arrangements for the tests you need. Getting the results At the end of the testing period, a stem cell transplantation physician and nurse will explain the results of your tests and review the entire stem cell transplant process. This is called a consent session. You will receive a copy of the transplant protocol or the treatment plan that will be followed. You can keep a copy of the transplant protocol in the back section of this guide. We encourage you to bring a family member and/or friend to this meeting and to ask any questions you may have. It may help to bring a pencil and paper so that you can take notes to help you remember everything. Do not be afraid to ask for explanations about anything you do not understand. It may also be helpful to write down any questions you have in advance, and record the answers as you hear them. Blank sheets of paper and a list of commonly asked questions are provided for your reference in the back of this notebook. You will be asked to sign consent forms for treatment at this meeting. Staff members will be available to answer your questions. You will also be given the tentative scheduled date of your hospital admission. You may change your mind about the transplant at any time before you begin the transplant conditioning regimen. Please keep in mind that there are a number of factors that may impact your scheduled transplant date: donor availability, insurance approval, availability of hospital beds, and your health. Your program nurse will keep you informed of any change to the scheduled transplant date. Section 4 Page 9

10 Meeting with Your Clinical Social Worker As part of your planning and preparation for transplant, you will meet or speak by phone with a clinical social worker from the care coordination department. He or she will meet with you and your primary caregiver (whether that is a partner, family member, or friend). This initial meeting provides an opportunity to discuss and explore such issues as: your understanding of the transplant process the primary caregiver s role during and after transplant communicating with children, understanding their adjustment and learning how to help them during your stem cell transplant coping with the emotional impact of transplant and the recovery period; finding positive approaches to coping with the many challenges of stem cell transplant identifying supports and ways to access them; assistance in connecting to needed resources both at DFCI and in the community health care proxy and/or advance directives spiritual resources Social workers provide emotional support and counseling to patients, couples, and family members throughout the different phases of transplant. They are available to help you and your family cope with concerns or issues that may arise during your illness and treatment, including feelings of sadness, anger, isolation, and helplessness as well as other family issues, and resource questions. Social workers are an active part of your care team and collaborate with your physician and nurse as needed. You and your social worker can develop a plan for how you would like to be supported during transplant and the recovery period afterwards. Section 4 Page 10

11 Fertility Issues Radiation therapy and chemotherapy treatments may damage reproductive cells and cause temporary or permanent infertility. Women s menstrual periods may stop as a symptom of early menopause. These side effects are related to a number of factors including your gender, age, the specific type and dose of radiation and/or chemotherapy, the use of single therapy or many therapies, and the length of time since treatment. If you are concerned about the effects of treatment on your ability to have children, you should discuss this with your doctor or a member of your care team before your stem cell treatment begins. Some of the options you may want to consider are: sperm banking, artificial insemination, and in vitro fertilization. Your transplant physician can recommend a fertility specialist who can discuss available options and help you (and your partner) through the decision-making process. There are resources available regarding infertility and cancer treatment. If you are interested, please contact: FertileHOPE fertility resources for cancer patients P.O. Box 624 New York, NY (888) 994-HOPE The American Society for Reproductive Medicine (205) Section 4 Page 11