Q: Why am I required to have insurance?

A: Your health insurance can help in paying for your health and mental health conditions for your bleeding disorder and for your other general health needs.  The Affordable Health Care Act allows your son/daughter to be on your policy until age 26 now.  In addition, the ACA requires women/teens girl's OB/GYN services be offered free and all health screening is free to everyone.  Insurance helps pay for health care needs beyond these free screenings, labs and check-ups including emergent care and hospitalizations.  Contact your local community services agency or the CBCD Social Worker if you have specific application questions.

Q: What does Children's Special Health Care Services cover?  Why isn't CSHCS free for everyone?

A: CSHCS covers costs related to the patient's bleeding disorder after all other insurance has been used.  If approved by the State, it will cover medication, medical appointments, transportation & hotel for medical care, physician appointments.  Sometimes, arrangements can be made to have CSHCS pay a portion of Part D Medicare and Commercial policies.  CSHCS payment plans are very inexpensive and are based on patient/family income.

Q: What should I know about how my health care services and coverage change when I turn 18?

A: Upon turning 18, the patient is responsible for his/her own medical care, including releases of information, scheduling appointments, ordering medications and notifying the HTC of medical concerns.  An exception to this can be made if a patient has a guardian. Otherwise, a release of information is required for an alternate contact.  

Q: What should I know and how can I help my child when they become 18?

A: Your child should be prepared to make their own medical decisions at age 18.  You can contact the HTC social worker if you/they are interested in discussing transition services.  If he/she receives Medicaid/CSHCS, he/she will need to sign their own paperwork and report only his/her income.  He/she should also find out if your commercial policy still covers them, as most policies cover dependent young adult children until age 26.  

Q: What is the purpose of a Release of Information or Authorization for Disclosure of Health Information?

A: These documents protect the patient from having any of her/his medical records shared with other people, schools or organization without permission from the patient (if 18) or parent (if under 18) or guardian (any age).  ROI and ADHI forms can be specific to information disclosed/not disclosed and you should discuss this with the social worker or nurse.

Q: How do I get transportation, food and personal expenses?

A: To receive assistance for emergent needs, you should first check with community or state resources, including the Department of Health & Human Services county office, community action agencies, or other social services agencies such as the Salvation Army.  If you/your child receives Medicaid, you should contact the Medicaid plan PRIOR to attending any medical appointment for assistance.  If you are refused assistance and still have emergent needs, contact the HTC Social Worker.  With her/his assistance, applications can be made to local, state and national foundations.  (Note: HFM and HFA require that you work with the HTC Social Worker.)

Q: Are there patient assistance programs for people with moderate to high incomes? ($40,000 to over $100,000/year)

A: There are many patient assistance programs for patients with bleeding disorders and their immediate family members.  Generally, programs require disclosure of gross income and household expenses.  Patients/families are expected to participate in payment of their needs.  For patients with moderate to high incomes, there are still programs available for unexpected personal and medical expenses.  Several prescription programs and the delta dental program allow patients with high incomes to receive free or partial payment for medications and dental appointments.  

Q: Why do I have to report my gross income when my net income is less?

A: Gross income is required for all income-based assistance since some people have tax-exempt income which is not noted in Net income reporting.

Q: Why do I have to call the HTC for prescription refill when I get calls directly from the pharmaceutical company?

A:The HTC staff and physician and monitor your health care, including bleeding history/symptoms better if we are notified of your prescription needs.  In addition, the pharmaceutical companies are not as likely to share updated information about possible alternative treatments/medication.  Your HTC physician and nurse can assist you with your prescription refills and concerns.

Q: Why aren't programs offered when I (or my family) can attend, like at night or on the weekend?

A: We would encourage you to express your concerns in writing about times and days of the week that would best meet your/your family's schedule so that we can offer programs during the weekdays, evenings and on weekends.  Contact the Social Worker for suggestions.

Q: Why are comp clinics only on Friday? I work on Fridays or I have class on Fridays.

A: At this time, most available clinic sites and physician schedules are available at our HTC on Fridays.  We are looking at alternative days for some clinic sites and would welcome your input.  Contact the nurse coordinator with suggestions.

Q: I don't have a computer or access to the internet.  How can I get updated information?

A: Please be sure to tell any of the HTC staff of your desire to have written materials mailed to your home.  Although many patients have computer and internet access, we understand that several patients do not have these available.

Q: Why are there so many forms to fill out when I come for my Comprehensive Clinic appointment? (I only want to see the team and go.)

A: Our HTC has several forms that we need filled out for your medical care and coordination including annual updates of personal information, insurance information, and emergency contact information.  In addition, we participate with several state and national organizations such as the Center for Disease Control that has their own forms and surveys.  If you need assistance, please let the secretary or social worker know and we can assist you in completion of the forms.

Q: Why do I need a PCP? (Can't CBCD provide all of my health care needs?)

A: A Primary Care Physician plays an important part in meeting your health care needs.  She/he is responsible for addressing your overall healthcare, including coordination with the HTC and addressing all of your non-bleeding related medical care.  This is a requirement for all Medicaid plans and most Medicare and Commercial Insurance plans.  A PCP is an important medical team member.

Q: Why should I attend the comp clinic every year?  I've had this diagnosis for life and know what to do.  I just need Factor refills, pain medications and surgery recommendations.

A: It is important that our physicians and medical staff have annual face to face contact with you for several reasons.  Some of these are: CSHCS requirements for Annual Plan of Care, Medicaid Plan requirements for enrollment and payment, Commerical insurance requirements for coordination, pharmacy/prescription requirements for pre-authorizations, and monitoring your bleeding disease.  Most importantly, it is a way for you to discuss concerns, new medications, HTC support programs and personal concerns.

Q: How can i get the Social Worker and/or Nurse to meet with my child's school to explain his/her diagnosis?

A: Contact the HTC office if you would like the Social Worker to meet or discuss adapted plans, 504 plans or IEPC recommendations with your/your child's school.  Contact the HTC Nurse if you need assistance for recommendations and explanations of physical restrictions and medication needs with the school.

Q: Why can't you (CBCD) tell me for sure what my child/ my diagnosis is?

A: Sometimes our physicians need to order additional testing and request additional monitoring of symptoms in order for them to make an appropriate diagnosis.  Be sure to talk to the hematologist and nurse if you have questions or concerns.

Q: How can I help other parents with a child with bleeding disorder?

A: You can become a mentor, co-presenter or attendee at CBCD trainings and offer your assistance to other parents.  CBCD cannot share any personal contact information for you or another family without a signed release of information.  You are encouraged to attend support sessions and trainings where you and other families can exchange information informally.

Q: Can I meet the social worker privately to talk about my anxiety, depression, employment or family?

A: Yes, one of the roles of the HTC social worker is to meet with patients or immediate family members to resolve mental health concerns and recommend local resources, including providing short-term therapy in the social work office.

Q: How do you work with HFM and national organizations?

A: The CBCD is part of a regional and national network of organizations that serve people with a bleeding disorder.  This includes shared training, resource development, access to services, and advocacy.  Some of these are: Hemophilia Foundation of Michigan, Hemophilia Federation of America, National Hemophilia Foundation, and The Hemophilia Alliance.  You can look at websites or ask CBCD staff if you have specific concerns or interest.

Q: I am moving out of the area, can you help me find a new doctor and/or HTC?

A: Notify CBCD of your expected new address and we can research the address and phone numbers for another HTC.  Our HTC can facilitate having you sign a release of information for your/your child's medical records to be sent to the new HTC.

Q: I just moved to this area, can you provide all of the same services, support and programs that I/my child received at our old HTC?

A: Every HTC has its own guidelines and requirements.  Some of the services that you received at your previous HTC may not be available at CBCD.  However, we have a well prepared team of medical professionals and welcome any input you might have about additional services that we can provide.  

Q: Why do I have to tell CBCD when my insurance/my child's insurance changes?

A: We are unable to provide you with medical care, including appointments, prescription medications, referrals for infusions, and other coordinated services such as in home specialty care and outpatient physical therapy without accurate and updated insurance information.

Q: Who is supposed to get preauthorizations for my office/comp visit, prescriptions or other services?

A: If your needs are related to CBCD services or referrals, our office staff complete the preauthorization requests.  This is usually done by either the nurse or social worker; however, it is sometimes completed by the clerical staff in our billing department.

Q: Can you help me/my child with special education plans?  What makes a bleeding disorder qualify for special education?

A: Yes, the social worker can help you determine if a special education plan is appropriate, in conjuction with you/your childs's teacher, principal and/or special education coordinator.  Bleeding disorders sometimes qualify under the Otherwise Health Impaired (OH) qualification.  Qualification is decided by the team, which can include CBCD staff at your request.  The social worker is also available to read a suggested plan (504, IEP, Adaptive plan) prior to you/your parent signing the document.

Q: Are there any programs that can help me now that I am unemployed or since I dropped out of high school?

A: There are several local, state and national programs that are available to you/your child if someone is unemployed and/or has left school without graduating.  We recommend that you check local resources such as Michigan Works, Michigan Rehabilitation Services and the Regional Educational Services District as well as attending CBCD training and support sessions.

Q: How does MSU CBCD help me with my Hep C or HIV treatment?

A: Our physicians and nurses can refer you to a specialist for testing, evaluation and treatment for your Hepatitis C and/or HIV care and treatment.  In addition, our social worker can help you coordinate payment for some or all of the treatment with your CSHCS worker if the diagnosis is related to your Hemophilia treatment.

Q: I've heard about a lot of different medications, including longer-action Factor.  How can I change to a different Factor product or different treatment for my VWD?

A: During your comprehensive care clinic appointment, talk to the hematologist and nurse about other options that might meet your lifestyle better.  They can develop a new care plan with you that might include a change of medication or treatment cycle.