Long-Term Follow-Up

Finding Resources and Support as a Transplant Survivor


 
Q: Are there organizations that provide emotional support to people after they've had a hematopoietic stem cell transplant?

Several organizations provide professional or peer counseling, matching interested survivors with others who need support. Volunteers are usually transplant survivors, caregivers or close family/friends of transplant survivors. These organizations include BMT Infonet, which matches those wishing to offer support with those who need it. See:

BMT Infonet

NBMT Link provides phone support. Call 1-800-546-5268 to arrange for a call from a trained peer counselor. See:

NBMT Resources and Support

CancerCare provides online, telephone or face-to-face counseling by professional oncology social workers for cancer patients and their families, including those who have had a transplant. See:

Get Help - Counseling

 

Q: Are there online resources where HSCT survivors can interact with other survivors?

Many online resources exist to allow interaction on specific topics related to cancer or HSCT. The Association of OnLine Cancer Resources lists a number of these at:

Internet Leukemia Support Resources

The American Cancer Society's Cancer Survivor Network provides chat rooms, personal Web pages, and a place to share inspiration. See:

Cancer Survivors Network



Q: Are there organizations that help transplant survivors with post-transplant medication costs?

Most pharmaceutical companies have programs to assist uninsured patients with free medications. The drug manufacturer's Web site usually has information about its program. For specific information, enter the name of the drug you are taking at:

Medication search by brand name

If you are not eligible for these programs or need additional assistance, organizations that provide financial aid can help. They usually help patients with specific diagnoses. Patients must review the eligibility requirements and services for each organization to find one that matches their circumstances.

Patient Access Network offers programs for "underinsured" patients to assist with out-of-pocket costs. See list of diagnoses covered in the "How to Apply" section at:

Patient Access Network Foundation

The Healthwell Foundation provides assistance with insurance co-pays and premiums for patients with a variety of specific diagnoses. See:

Who is eligible?

Chronic Disease Fund provides co-pay assistance to underinsured patients with specific diagnoses. Patients must be compliant with their medications to be eligible. See:

Co-pay assistance programs



Q: Are there organizations that will help me locate financial assistance programs and apply for aid to pay for out-of-pocket medical costs?

Several organizations act as a clearinghouse for information on assistance programs but do not provide financial assistance themselves. These include:

  • Partnership for Prescription Assistance matches patients to a variety of assistance programs based on the medications the patient is taking. See:
    Partnership for Prescription Assistance
  • RxAssist.org maintains a comprehensive list of pharmaceutical assistance programs to provide medications. Generally, these programs are for patients without prescription coverage through an insurance provider. See:
    Patient assistance programs
  • Needymeds.com maintains a variety of resources, including co-pay assistance, discount cards, money-saving tips and other resources to assist patients in obtaining low- or no-cost medications. See:
    Find help with the cost of medicine

 

Q: Where can I go for help if I'm having problems with my insurance coverage or with accessing health care after my transplant?

The Patient Advocate Foundation assists patients with insurance and health care access problems, and includes resources specific to HSCT patients. See: Patient Advocate Foundation