The volunteers of this Foundation work tirelessly to find financial aid from government and other assistance resources. The following are some of the resource options available to cancer patients and their families. The DoD article highlights the disparity of funding for mesothelioma cancer cure research and the urgent need to raise more money for finding a cure through private foundations that focus all their research efforts on only one cancer, mesothelioma.
There are a number of federal agencies that fund cancer research. The most well-known is the National Cancer Institute (NCI) which is the largest institute in the National Institutes or Health as well as the largest cancer research organization in the world. NCI’s budget for fiscal year 2009 was $4.97 billion. Other federal government agencies, including other NIH Institutes and Centers, the Centers for Disease Control and Prevention also fund cancer research. But perhaps the strangest agency in the cancer field is Department of Defense. Initially an umbrella group called the National Breast Cancer Coalition (NBCC) fought successfully to create the Department of Defense Breast Cancer Research Program (DOD BCRP) in 1992. This was an end run around other agencies in order to get more funding specifically for breast cancer which has more funding than any other disease in the nation except AIDS. Since 1992 over $2 billion has been allocated to peer-reviewed breast cancer research through this program.<
Recently the Department of Defense (DoD) has branched out into mesothelioma research. In 2008, awarded its first research grant of $2.4 million award to Courtney Broaddus, M.D., for her work on macrophage-induced inflammation in mesothelioma. The grant was awarded as the result of a directive by the Senate Defense Appropriations Subcommittee to fund research in mesothelioma.
The DoD funding of mesothelioma research makes sense in that a common factor in asbestos exposure and the subsequent development of mesothelioma is military service. Until its ban in the 1970s, asbestos was used throughout the military and in particular in shipbuilding. It is estimated that about a third of those who die from mesothelioma were exposed to asbestos on the ships and in the shipyards of the United States Navy.
In 2009, the Department expanded the program by awarding several million dollars in funding to three research projects that focus on investigating the early detection of mesothelioma, identifying new therapeutic targets, and implementing a clinical trial on new therapy.
The funding for research on mesothelioma lags far behind that of other cancers. From 2004 to 2007, the National Cancer Institute (NCI) invested less than $6 million on mesothelioma research - only 0.1 percent of its annual budget. Two comparisons put this number into perspective. Breast cancer research from the NCI alone received $685 million in 2009. And The Washington Post reports in a September 6, 2010 story that Defense Department spending on military music bands is estimated at more than $500 million a year. So it appears that it is more important to fund the blowing of brass instruments than it is to fund research for finding a cure to mesothelioma cancer that effects the lives of many who die from the desease they contracted from exposure to asbestos on the ships and in the shipyards of the US Navy.
These numbers highlight the urgent need to raise more money for mesothelioma research, which is the sole purpose of the Mesothelioma Research Foundation of America.
Cancer imposes heavy economic burdens on both patients and their families. For many people, a portion of medical expenses is paid by their health insurance plan. For individuals who do not have health insurance or who need financial assistance to cover health care costs, resources are available, including Government-sponsored programs and services supported by nonprofit organizations. Cancer patients and their families should discuss any concerns they may have about health care costs with their physician, medical social worker, or the business office of their hospital or clinic.
Listed below are Government agencies, organizations, and programs that are designed to provide assistance for cancer patients and their families. Resources provided by individual organizations vary, and it is important to check with a specific group to determine if financial aid is currently available. Organizations that provide publications in Spanish or have Spanish-speaking staff have been identified.
In addition to cancer treatments, many cancer patients need assistance paying for transportation to and from medical appointments and basic living expenses such as food and housing. Listed below are organizations dedicated to helping cancer patients and their families during and after the patient's treatment.
Hope Lodge, a temporary housing program supported by ACS, provides free, temporary housing facilities for cancer patients who are undergoing treatment. For more information about this program, or to find locations of Hope Lodges, call the ACS's toll-free number.
Telephone: 1–800–227–2345 (1–800–ACS–2345)
Web site: http://www.cancer.org/Treatment/SupportProgramsServices/HopeLodge/
The Road to Recovery is an ACS service program that provides transportation for cancer patients to their treatments and home again. Transportation is provided according to the needs and available resources in the community and can be arranged by calling the toll-free number or by contacting the local ACS office.
The ACS offers Taking Charge of Money Matters, a workshop for people with cancer and their loved ones about financial concerns that may arise during or after cancer treatment, regardless of the person's health insurance coverage. The session provides an opportunity to discuss financial matters with guest speakers who are knowledgeable about financial planning. More information about this workshop is available on the ACS Web page at http://www.cancer.org/ on the Internet.
In addition to the Government-sponsored programs and organizations already listed, these general resources may also be helpful:
State and local social services agencies can provide help with food, housing, prescription drugs, transportation, and other medical expenses for those who are not eligible for other programs. Information can be obtained by contacting your state or local agency; this number is found in the local telephone directory.
Community voluntary agencies and service organizations such as the United Way of America, Salvation Army, Lutheran Social Services, Jewish Social Services, and Catholic Charities may offer help. These organizations are listed in your local phone directory. Some churches and synagogues may provide financial help or services to their members.
Some people living outside the United States may wish to have their cancer treatment in this country and require financial assistance to do so. Many facilities in the United States treat international cancer patients. These facilities may also provide support services, such as language interpretation, assistance with travel, and guidance in finding accommodations near the treatment facility for patients and their families. They might also be aware of resources that provide financial assistance to international patients.
If you live outside the United States and would like to obtain cancer treatment in this country, you should contact cancer treatment facilities directly to find out whether they have an international patient office. See our list of mesothelioma specialists for contact information (http://www.mesorfa.org). . The NCI lists contact information for designated cancer centers throughout the United States. This list is located at http://cancercenters.cancer.gov/cancer_centers/cancer-centers-names.html on the Internet.
For additional information about the process and requirements involved when traveling to the United States for treatment, you can review the “Finding a Treatment Facility for Patients Living Outside the United States” section of the NCI fact sheet How To Find a Doctor or Treatment Facility If You Have Cancer located at http://www.cancer.gov/cancertopics/factsheet/Therapy/doctor-facility on the Internet.
Patient Assistance Programs are offered by many pharmaceutical manufacturers to help pay for medications. These programs are sometimes called Indigent Drug Programs. To learn whether a specific drug might be available at reduced cost or for free through such a program, talk with a physician or a medical social worker or visit the drug manufacturer's web site. Most pharmaceutical companies will have a section entitled “patient assistance programs” on their web site.
The Partnership for Prescription Assistance has information about more than 475 public and private patient assistance programs. If you have easy internet access then this website is the best place to start for getting financial assistance to pay for the drugs your doctor is recommending. You can type in the name of the drug and see right away what programs are available to you.
Telephone: 1–888–477–2669 (1–888–4PPA–NOW)
Web site: https://www.pparx.org/
At the Mesothelioma Research Foundation of America, you can call toll free (800) 909-Meso (6376) to talk with one of our Cancer Information Specialists (CIS) who will gladly look up the phone numbers or the web site of the pharmaceutical company that makes the drug you are using. The CIS can explain to you the process of getting the drug for free. Typically your doctor will need to sign off on the application form. You can either fill the form out online or you can print it out. The most commonly used drug for mesothelioma is doxorubicin, also called Doxil. For example, you can apply for that drug at http://www.doxiline.com.
You can also call toll free number to the pharmaceutical company to request the application form be sent to you.
|Company||Drug||Toll-free Telephone Number|
|Ortho Biotech Products||doxorubicin (aka Doxil)||800 553-3851|
|Sicor Pharmaceuticals, Inc.||Carboplatin, Cisplatin||800 729-9991|
|Pfizer||Camptosar, Lyrica, Motrin||866-776-3700|
People with cancer and their families sometimes need assistance coping with the emotional as well as the practical aspects of their disease. This fact sheet includes some of the national nonprofit organizations that provide this type of support. It is not intended to be a comprehensive listing of all organizations that offer these services in the United States, nor does inclusion of any particular organization imply endorsement by the Mesothelioma Research Foundation of America. The intent of this fact sheet is to provide information useful to individuals nationally. For that reason, it does not include the many local groups that offer valuable assistance to patients and their families in individual states or cities.
The ACS is a voluntary organization that offers a variety of services to patients and their families. The ACS also supports research, provides printed materials, and conducts educational programs. Staff can accept calls and distribute publications in Spanish. A local ACS unit may be listed in the white pages of the telephone directory under “American Cancer Society.”
American Cancer Society (ACS) Supported Programs:
This is both a telephone and Web-based service for cancer survivors, their families, caregivers, and friends. The telephone component (1–877–333–HOPE) provides survivors and families access to pre-recorded discussions. The Web-based component offers live online chat sessions, virtual support groups, pre-recorded talk shows, and personal stories.
I Can Cope is a patient education program that is designed to help patients, families, and friends cope with the day-to-day issues of living with cancer.
This program was developed by the Cosmetic, Toiletry, and Fragrance Association Foundation in cooperation with ACS and the National Cosmetology Association. It focuses on techniques that can help people undergoing cancer treatment improve their appearance. The entire program is also available in Spanish.
CancerCare is a national nonprofit agency that offers free support, information, financial assistance, and practical help to people with cancer and their loved ones. Services are provided by oncology social workers and are available in person, over the telephone, and through the agency's Web site. CancerCare's reach also extends to professionals—providing education, information, and assistance. A section of the CancerCare Web site and some publications are available in Spanish, and staff can respond to calls and e-mails in Spanish.
The Cancer Hope Network provides individual support to cancer patients and their families by matching them with trained volunteers who have undergone and recovered from a similar cancer experience. Such matches are based on the type and stage of cancer, treatments used, side effects experienced, and other factors.
The CICL, part of the Psychosocial Program of the AMC Cancer Research Center, is a toll-free telephone service for cancer patients, their family members and friends, cancer survivors, and the general public. Professional counselors provide up-to-date medical information, emotional support through short-term counseling, and resource referrals to callers nationwide between the hours of 8:30 a.m. and 5:00 p.m., Mountain Standard Time, Monday through Friday. Individuals may also submit questions about cancer and request resources via e-mail.
The Hospice Education Institute serves a wide range of individuals and organizations interested in improving and expanding hospice and palliative care throughout the United States and around the world. The Institute works to inform, educate, and support people seeking or providing care for the dying and the bereaved. HOSPICELINK, a service of the Institute, maintains a computerized database and up-to-date directory of all hospice and palliative care programs in the United States. HOSPICELINK helps patients and their families find hospice and palliative care programs, and provides general information about the principles and practices of good hospice and palliative care.
The LAF, a nonprofit organization founded by cancer survivor and cyclist Lance Armstrong, provides resources and support services to people diagnosed with cancer and their families. The LAF's services include Cycle of Hope, a national cancer education campaign for people with cancer and those at risk for developing the disease, and the Cancer Profiler, a free interactive treatment decision support tool. The LAF also provides scientific and research grants for the better understanding of cancer and cancer survivorship.
LCA offers programs designed to help improve the quality of life of people with lung cancer and their families. Programs include education about the disease, psychosocial support, and advocacy about issues that concern lung cancer survivors.
The NCCS is a network of groups and individuals that offer support to cancer survivors and their loved ones. It provides information and resources on cancer support, advocacy, and quality-of-life issues. A section of the NCCS Web site and a limited selection of publications are available in Spanish.
The NHPCO is an association of programs that provide hospice and palliative care. It is designed to increase awareness about hospice services and to champion the rights and issues of terminally ill patients and their family members. The NHPCO offers discussion groups, publications, information about how to find a hospice, and information about the financial aspects of hospice. Some Spanish-language publications are available, and staff are able to answer calls in Spanish.
The NPTC provides the National Patient Travel Helpline, a telephone service that facilitates patient access to charitable medical air transportation resources in the United States. The NPTC also offers information about discounted airline ticket programs for patients and patient escorts, operates Special-Lift and Child-Lift programs, and brings ambulatory outpatients to the United States from many overseas locations.
The PAF provides education, legal counseling, and referrals to cancer patients and survivors concerning managed care, insurance, financial issues, job discrimination, and debt crisis matters. The Patient Assistance Program is a subsidiary of the PAF. It provides financial assistance to patients who meet certain qualifications. The toll-free number is 1–866–512–3861.
The R. A. Bloch Cancer Foundation matches newly diagnosed cancer patients with trained, home-based volunteers who have been treated for the same type of cancer. The Foundation also distributes informational materials, including a multidisciplinary list of institutions that offer second opinions. Information is available in Spanish.
The mission of Vital Options is to use communications technology to reach people dealing with cancer. This organization holds a weekly syndicated call-in cancer radio talk show called “The Group Room®,” which provides a forum for patients, long-term survivors, family members, physicians, and therapists to discuss cancer issues. Listeners can participate in the show during its broadcast every Sunday from 4 p.m. to 6 p.m., Eastern time, by calling the toll-free telephone number. A live Web simulcast of “The Group Room” can be heard by logging onto the Vital Options Web site.
The Wellness Community provides free psychological and emotional support to cancer patients and their families. The organization offers support groups facilitated by licensed therapists, stress reduction and cancer education workshops, nutrition guidance, exercise sessions, and social events.
The following are also commonly recommended web sites found to provide helpful senior care resources:
Adult day care centers typically provide social activities, meals and various health care services that can range from medication management to physical therapy. Adult day care locations may operate as stand-alone facilities, or may be located in nursing facilities, senior centers or other areas. AdultDayCare.org is a national resource for adult day care centers. Our directory contains 4,500 adult day care locations across the United States.
The Centers for Medicare & Medicaid Services (CMS) is a branch of the U.S. Department of Health and Human Services. CMS is the federal agency which administers Medicare, Medicaid, and the Children's Health Insurance Program. Provides information for health professionals, regional governments, and consumers. Additional information regarding CMS and it's programs is available at http://www.cms.hhs.gov/ .
In order to serve a growing senior population, AoA envisions ensuring the continuation of a vibrant aging services network at State, Territory, local and Tribal levels through funding of lower-cost, non-medical services and supports that provide the means by which many more seniors can maintain their independence. The mission of AoA is to develop a comprehensive, coordinated and cost-effective system of home and community-based services that helps elderly individuals maintain their health and independence in their homes and communities.
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