Can Cancer Patients from Other Countries Receive Treatment in the USA?
Joana Ramos, MSW
Disclaimer: This fact sheet is intended for general informational purposes only and is not legal advice. The contents of this fact sheet was accurate at the time of publication, and the author cannot be responsible for changes or different information that is given to patients and families by specific health care facilities. Likewise the author is not responsible for the outcome of the quest of any individual to receive medical care in the USA or any other country. The inclusion of names of organizations and businesses is for informational purposes only and does not constitute endorsement. The opinions expressed herein are solely those of the author.
This Fact Sheet may not be reproduced in whole or in part without the author's prior written permission.
Background
We now live in both the best of times and the worst of times in which to be diagnosed with cancer. In industrialized countries of the world, most people with cancer have access to well-established standards of care, including state-of-the art, expensive, treatment modalities. For childhood cancer in particular, this has meant that now some 70% of children stricken with many forms of the deadly disease survive or are cured. In developing and transitional countries, however, the cancer picture continues to be quite bleak and cancer is expected mean death. In these nations, it is estimated that 90% of children with cancer die, and only some 10% have access to treatment at all.
Greatly improved access to information and the development of electronic media worldwide, now mean that most literate people are aware that modern cancer treatments exist. When a loved one anywhere is diagnosed with cancer, families naturally want them to be able to receive the best treatment possible. But if they live in a country where treatments are not available or are priced beyond their reach, they look for other alternatives.
This improved information access has created cruel dilemmas for many families. While the well-off of developing countries have always sought treatment abroad, mostly in the USA or Europe, this option is usually not possible for ordinary citizens. Expectations are further raised by news coverage that highlights extraordinary high-tech medical procedures and treatments performed in the USA. Rarely however are mundane matters like the fact that the USA is also unique as the only industrialized nation in the world without a national health system, ever mentioned. The reputation of the USA for innovation, resources, technological advances, and the generosity of its people has been well known throughout the world. Therefore people believe that miracles are possible if only one can come to this advantaged nation.
In the developing and transitional countries of the world that have any form of national health system, health care services may be provided, but patients must purchase their own medications and supplies. Many basic chemotherapy drugs, for example are either not available or are so astronomically expensive, that patients cannot afford them.
It is also of note that due to the changing immigration patterns in recent years, it is likely that patients from any part of the world may have family or friends living in the USA. Therefore, a normal response for patients diagnosed with cancer in a resource-poor country is to seek care in the USA.
Developing adequate cancer control programs worldwide is a challenge that won't be met for some time to come, although incremental progress is being made. The most practical and cost-effective long-term goal is for patients to be able to receive necessary care in their home country or region. However, the patients of today need help now. This fact sheet attempts to address the issues and to present a realistic picture of treatment possibilities.
Realities
The realities that face international patients, however, are harsh. It is often the job of social workers to explain to inquiring families just what these possibilities are. To be blunt, it all comes down to money. In general, cancer patients seeking treatment in the USA must be aware of the following:
- Treatment centers customarily require a guarantee of payment before accepting any uninsured patient for evaluation for treatment. Commonly a deposit of one-third to one-half the estimated total amount must be paid up-front. An average fee for blood & marrow transplants, for example, is in the neighborhood of $350,000 USD. Complications and lengthy hospital stays can increase the price tremendously.
- US laws require that most prospective patients obtain a visa to enter the country. In order for a medical visa to be issued, a patient must show proof of acceptance for evaluation at a treatment facility and evidence that s/he has compelling personal or business ties to their homeland that will guarantee their return, and will preclude them from becoming a public charge in the USA. Since the advent of tightened national security measures, visas are becoming even more difficult to obtain. Sometimes it is possible for patients to enter under other types of visas, but each situation must be handled individually and private legal assistance may be needed. Those who enter the country for medical treatment are not eligible for public benefit programs
- Travel expenses usually are the responsibility of the patient and family. Some limited programs exist to assist child patients and caregivers to travel internationally for medical care, but resources are presently dwindling.
- Living expenses are another factor that treatment centers will calculate before accepting an international patient. Patients usually must travel with a caregiver, and will be responsible for meals and lodging, presciption drugs and over the counter medications and supplies, special comfort items during treatment, and general living expenses. Just as in US families, usually one adult must stop working in order to become the patient's caregiver. The issues for families with children are even more complex.
- Cross-cultural adaptation in the best of circumstances may be quite trying and can cause acute distress, especially when accompanied by language barriers and financial difficulties. The problems are exacerbated when a patient travels for medical treatment and can affect the mental health of the whole family. Expectations for positive treatment outcomes run high as well. Unfortunately patients from developing countries are already at higher risk due to factors late like late diagnosis and prior inadequate treatment or disease management.
What can be done?
Given the above factors, it is still possible that some international patients will be successful in arranging to be treated in the USA. A lot depends on luck, patient's age (more possibilities exist for children) geography, organizational skills, and the availability of family, friends, and/or strong support networks in the USA that are willing to go the extra mile on behalf of a particular patient. Some possibilities include:
- Donated or reduced-fee care. In some communities physicians and facilities may donate or reduce their customary fees, or allow families to set up a payment plan. This may be more of an option in communities where there is less of a demand for charitable care for uninsured residents. Patients with family or friends in a community to serve as a host family are at an advantage, as hospitals may be more willing to accommodate those who have a support system in place. It can't hurt to ask for fee adjustments.
- Clinical trials are an option for a limited number of patients. Patients who are able to meet all of the required medical criteria and have adequate financial support, may want to investigate whether they might be eligible for a clinical trial at the National Institutes of Health in Bethesda, MD (adults and children), and for children, at St. Jude Children's Research Hospital, in Memphis, TN. Both of these centers offer treatments in the form of research protocols at no charge to eligible patients, who must be referred by physicians. Both centers have no citizenship or residency requirements for qualifying research subjects. There is often misunderstanding about the nature of these research centers, which are not general hospitals open to all. The centers need to be contacted directly for details about their clinical trials programs. Support for certain living expenses may sometimes be available but international patients should expect to be asked to show proof of support and to pay their own way to come for evaluation.
Other avenues for treatment for patients in their home countries should also be considered. These include:
- Second-opinion consultation is available remotely for children with cancer from the Ped-Onc Branch of the National Cancer Institute. Families may initiate an inquiry, and the consultation will be arranged physician-to-physician. In some cases, the NCI physicians will be able to offer treatment recommendations to the child's treating physician. NCI should be contacted directly for details on necessary medical reports and whether summary English translation is needed.
- Appeals to pharmaceutical companies for donations of treatment drugs or access to medicines under Compassionate Use (CU) protocols may be feasible for some patients. While patient assistance programs (PAP) for cancer treatment drugs are rare, there is a PAP for Glivec (Gleevec in the USA), used to treat certain forms of chronic myelogenous leukemia and gastro-intestinal stromal tumor (GIST). For those interested in learning more about requesting drug donations under CU, there is an organization that provides such information on its website, noted below. While drug companies may say that programs are limited to US residents, it certainly is appropriate for international patients to request this type of assistance.
- Alternative sources of treatment drugs include purchase by home-country medical centers or NGOs from international organizations whose mission is to provide essential drugs at affordable prices to developing countries. The possibility of purchasing generics from manufacturers outside the USA should also be investigated.
Other considerations
- Fundraising campaigns are usually not a viable way to raise the money necessary for treatment in the USA, despite what some charitable organizations recommend. Most families (except for the most well-connected and/or wealthy in their home countries) will simply never be able to raise the amount of money needed, especially in the necessary time frame for treatment. Many desperate appeals in all languages now appear regularly on the Internet, but for most, they represent a false hope. Nevertheless, it is helpful for patients and families to raise as much money as they can to support treatment-related expenses, no matter where they live.
- Seeking treatment in Europe or in selected centers in medium-income countries. Private-pay care in the nations of Europe, and in certain private facilities in countries of Asia , the Middle East, and in Latin America is another option that should be considered, especially for families that have some resources. Fees in these places are usually considerably lower than in the USA.
Conclusions
It is a difficult time for patients with cancer who live in countries where they do not have access or treatment, and it is also quite difficult for them to come to the USA where treatments exist but access does not. It is a problem that will not be quickly resolved, so it is very important that families be given information that will help them develop realistic expectations for the care of their loved ones. Medical facilities and cancer organizations in the USA can help work towards solutions by participating in efforts to increase collaboration and involvement in countries of the Two-Thirds world. The following selected resources may be useful to families and those who work with them in trying to find help.
Selected Resources
Clinical Trials Information
National Institutes of Health
Clinical Trials Call Center
1-800-411-1222 (US only)
http://www.clinicaltrials.gov
National Cancer Institute
Clinical Trials Support Center
1-888-624-1937 / 1-888-NCI-1937 (US only)
http://ccr.ncifcrf.gov/trials/cssc/default.asp
NCI Ped-Onc Branch
1-877-624-4878
http://home.ccr.cancer.gov/oncology/pediatric/
International Cancer Research Portfolio
http://www.cancerportfolio.org/
St. Jude Children's Research Hospital
http://www.stjude.org
Coalition of National Cancer Cooperative Groups
http://www.cancertrialshelp.org
Centerwatch
http://www.centerwatch.com
Access to Medicines
Management Sciences for Health, Center for Pharmaceutical Management
International Drug Price Indicator Guide
Publishes annual prices guide from nonprofit drug suppliers and procurement agencies, with supplier contact information
http://www.msh.org/what_MSH_does/cpm/resources.html
International Dispensary Association (IDA)
http://www.ida.nl/en-US
Information about Compassionate Use (CU) of drugs in development
Cancer Action Now
http://www.canceractionnow.org
Patient Assistance Programs
http://www.rxassist.org
http://www.needymeds.com
Pharmaceutical Research and Manufacturers of America (PhRMA)
http://www.phrma.org/
Novartis Glivec International Patient Assistance program (GIPAP)
http://www.glivec.com/content/home.jsp.
Travel Resources
US Department of State
http://UnitedStatesVisas.gov
Official information for citizens of other countries desiring to
travel to the USA for any purpose. Explains visa process, links to embassies
and consulates of all nations, and to relevant US government agencies.
http://unitedstatesvisas.gov/
National Patient Air Transport Hotline (NPATH)
Information clearinghouse regarding travel assistance for patients in North
America and internationally.
(800) 296-1217
(757) 318-9107
Fax: (757) 318-9107
http://www.patienttravel.org
Information & Referral to International Treatment Centers and Cancer Organizations
International Network for Cancer Treatment and Research
http://www.inctr.org
International Union Against Cancer (UICC)
International Directory of Cancer Institutes and Organizations
http://www.uicc.org/index.php?id=578&L=0
Cancer Index
Guide to Internet Resources for Cancer
http://www.cancerindex.org/clinks1.htm
Guia de Recursos sobre el Cancer Infantil
Guide to Childhood Cancer Resources for Spanish and Portuguese-speaking
countries
http://www.neuroblastomainfantil.info/
Bone Marrow Donors Worldwide
International bone marrow stem cell, and cord blood member registries
http://www.bmdw.org
National Marrow Donor Program
International NMDP Transplant Centers
http://www.marrow.org/NMDP/international
_transplant_centers.html
World Health Organization
Cancer: Related links
http://www.who.int/cancer/media/links/en/