HPV Cancer Resources

Helpful Information for Parents, Patients, Partners, and Providers

Helpful Information for Parents, Patients, Partners, and Providers

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Dealing With The Financial And Legal Burdens of Cancer

If you live in a country with some type of national health service, much of your cancer treatments will be covered by this system. If you don’t live in such a country (such as the United States), then you’ll have to find a way to pay for this. If your fortunate you’ll have good healthcare insurance, which should pick up most of the expenses. Even with this coverage, you may be expected to pay thousands of dollars for your care to satisfy your insurance deductible. Without insurance, getting your healthcare paid for can be daunting unless you are independently wealthy.

Paying for cancer care is serious business. In the US, medical bills are the number one reason that families are forced to declare bankruptcy, with over 500,000 doing so in 2019. More than 42 percent of the 9.5 million people diagnosed with cancer from 2000 to 2012 drained their life's assets within two years. Cancer patients are 2.65 times more likely to file for bankruptcy than those without cancer, and bankruptcy puts them at a higher risk for early death. Google “financial toxicity of cancer” and you will find many articles on the subject. Here’s a recent one from KHN: In America, Cancer Patients Endure Debt on Top of Disease. A study in 2024 suggested that "medical debt was associated with more days of poor physical and mental health, more years of life lost, and higher mortality rates for all-cause and leading causes of death following a dose-response association."

With that in mind, I have posted some information below that may point you to ways to save some money, and allow you to focus your time and energy on the healing process, where it belongs. One place you can start is with the Cancer Financial Assistance Coalition, which has a searchable database of financial resources covering housing, transportation, medicines, utilities, meal delivery, etc.

The Cancer Legal Resource Center is a division of the Disability Rights Legal Center. It's the only nationwide free legal service dedicated to cancer survivors. It provides legal information and resources via its website, phone, and online help channels. Survivors needing legal representation can be matched with an experienced local attorney. The legal help provided covers all aspects of life affected by cancer such as debt/finances, medical malpractice, maintaining employment during treatment, and accessing Medicaid/Medicare.

Cancer Legal Care is an organization helps people with a cancer diagnosis address diagnosis challenges, employability, insurability, and financial security. Their services include help with insurance claims, phone/online legal consultations, representation from volunteer attorneys, and legal help on issues like estate planning, disability benefits, and employment.

If you live in New York, The Cancer Legal Aid and Services Program (CLASP) provides free legal representation for eligible New York residents. Its goal is to empower patients, secure their access to medical treatment, and improve the lives of cancer survivors. Services include setting up power of attorney, maintaining access to Medicare/Medicaid, handling payment disputes with private insurance, access to public assistance programs (SNAP, disability, and unemployment benefits), securing medical leave, and eviction prevention.

The Patient Advocate Foundation assists cancer survivors through its case management program. Case managers help survivors access care and employment benefits, and financial assistance. To be eligible, the beneficiary must be a US citizen or permanent resident in the state or territory where they are receiving care. In addition to direct financial assistance, beneficiaries can get copay relief, small financial grants (usually $1000), and be awarded scholarships.

Triage Cancer offers free educational materials on the legal and practical issues that survivors face after a cancer diagnosis. Some are meant for survivors, while others are meant for their caregivers and families. Some of the issues covered include financial management, employability, healthcare, insurance coverage or processing claims, as well as cancer patients’ consumer rights. These educational resources are in the form of webinars, conferences, and online resources such as videos, podcasts, and blog posts.

Family Reach is a nonprofit that provides financial support to families of cancer survivors. Support services include financial support for non-medical expenses to residents of all 50 US states, a resource database to connect members with other support services they are eligible for at the federal and state levels, as well as financial advice.

Social Security Disability Insurance is a part of the federal Social Security program that provides benefits to workers who are too disabled to maintain employment. It recognizes cancer as a valid cause of disability. Eligibility is determined by the beneficiary having been employed for an extended period of time, during which they paid social security taxes. Benefits include monthly direct cash payments to the beneficiary and some affected family members. To be eligible, the beneficiary must prove that the disability is “severe,” which means it will affect them for at least one year or will most likely lead to their loss of life.

The Healthwell Foundation helps underinsured cancer survivors receiving treatment. Their coverage extends beyond cancer to include other chronic and life-threatening illnesses. Assistance only extends to those with insufficient insurance coverage, not to the uninsured.

The Expect Miracles Foundation offers financial support for cancer survivors. They help deal with the unique financial hardships that young adult cancer survivors face after paying for treatment. The grant program operates two fund. One offers financial assistance grants that cover nonmedical expenses (rent, car payments, education, etc.). The second fund is the family building fund, which pays for young adults’ fertility-related expenses such as IVF, surrogacy/gestational carrier, and adoption costs.

Services include financial assistance to cover copays and prescription costs. Healthwell also chips in to pay insurance premiums, travel costs, treatment costs for pediatric patients, and payment for therapy and oncology counseling.

If you’re a low income senior, you can also check out the Center for Benefits Access at the National Council on Aging for the resources they offer.

If you are still unable to afford your medical bills, you can always consider a GoFundMe campaign. I think it's shameful that so many people in the US are forced to resort to this option in order to pay their medical bills. Overall, the numbers are not encouraging, but these vary widely depending on who your friends are, or if your campaign goes viral. in 2020, the number of U.S. GoFundMe campaigns related to medical causes was about 200,000. This is about 25 times higher than the number of such campaigns on the site in 2011. If you're famous or part of a circle of friends who have money, your crowdfunding campaign is much more likely to succeed than if you are middle-class or poor. "Despite the site’s hopeful vibe, most campaigns generate only a small fraction of the money owed. Almost all of the medical-expense campaigns in the U.S. fell short of their goal, and some raised little or no money, a 2017 study from the University of Washington found that the average campaign made it to just about 40 percent of the target amount, and there is evidence that yields—measured as a percent of their target—have gotten worse over time." Source: GoFundMe Is a Health-Care Utility Now: Resorting to crowdfunding to pay medical bills has become so routine, in some cases health professionals recommend it.
By Elisabeth Rosenthal; The Atlantic Feb. 5, 2024.

Hospital Bills

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You may one day get an enormous bill from the hospital for your cancer care. The bill will have been sent to you from the chargemaster, which is the hospital’s financial office that sends out the bills. These bills are different from the ones you receive from your electric utility, or from the folks who fixed your broken washing machine. These bills are actually negotiable, and your ability to negotiate these bills is especially important for those who self-pay (i.e. lack insurance). Think of these hospital bills as the starting price in a negotiation, but you can bargain your way down from there. Check out this excellent article, Bitter Pill: Why Medical Bills Are Killing Us, by reporter Steven Brill that describes exactly how charge masters function, and how you can appeal the amount that they are asking for. Check out this article on how to appeal your hospital medical bills. I also recommend taking a look at Hospital Chargemaster Insanity from the Pepperdine Law Review for more details.

One other option is to employ the services of a company that will revue your medical records for discrepancies, and then help you fight to reduce your bills. As an example, there’s a company, Triage Cancer, that will review your bills and advise you how to proceed if any problems are noted. The service costs $99/year, and only deals with bills of more than $500. As I have not used this service, I can’t recommend it, nor would I say it’s bad. Just pointing out that it exists. Visit their website and ask lots of questions if you might be interested in this service.

Paying for Medicines

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The high price of many drugs is a major healthcare concern of patients in the US. I do have a few suggestions for you to obtain lower priced drugs:

Ask for a lower price at the drug store
1) Any time you buy a drug at a pharmacy using your insurance, ask if the price would be LOWER if you paid for it on your own. This is sometimes the case, but pharmacists have been forbidden by law from telling you that the drug would be cheaper if you paid for it yourself. I believe that this law is going to be repealed soon, but it never hurts to ask your pharmacist this question. You might get a pleasant surprise. The key point here is you have to ASK this question; pharmacists are NOT allowed to tell you this because of certain regulations. The worst that can happen is that the pharmacist simply tells you it is cheaper with your insurance. Nothing ventured, nothing gained.

Go online to find the cheapest local pharmacy
2) You can try looking for your drug on the GoodRx website. Simply type in the name of the medication you are looking for, along with your zip code, and the site will tell you the prices at nearby pharmacies. You can also get free downloadable coupons that will save you money at those pharmacies. Finally, if you’re looking for savings on generic prescription drugs, check the prices at Mark Cuban’s Cost Plus Drugs. It’s a legit business, and they are wholesalers who charge a set markup on the manufacturing cost along with a fee for the pharmacist. Check it out at CostPlusDrugs.com.

Buy your drugs at Costco
3) If you’re a member, check out drug prices at Costco. Their prices often beat those of neighborhood pharmacies.

Get your drugs from Canada
4) If you live near the Canadian border, you might be able to buy your drugs at a substantial discount in Canada (except that the border has been closed to US residents due to the COVID-19 pandemic). Be careful, however, of online ads that tout themselves as Canadian pharmacies. Many of these are fake, and the medications you buy might either never arrive or be counterfeit and of dubious quality.

Get help from a drug company patient assistance program
5) Many drug companies have patient assistance programs that can offer you discounts or rebates on certain of their medications. How would you find out about these? You can start by going to the Partnership for Prescription Assistance website. Look at the responses and then read them closely to figure out whether or not you would qualify for them. You can also look for help from RxAssist, which is an online database of drug company assistance programs. Try RxHope, which provides a similar service. Try RxOutreach, which provides a mail order pharmacy for folks who don’t have insurance coverage. You can also Google “prescription help” along with the name of your medication, and see what pops up. Finally, go to the drug manufacturer’s website for any particular drug, and you might find more info there.

Change insurers, or appeal the decision, if a drug you take is dropped from your formulary
6) Formularies. These are the lists of drugs that various insurance companies will, and will not, cover. Medicare patients signing up for drug plans are advised to check the formularies of the different plans to see which ones provide the best coverage for the drugs they take. Cancer patients, though, will not be able to predict which drugs they might need in the future. Drugs get added and dropped by formularies all the time, and what happens if you are responding well to a particular drug, and then your insurance won’t cover it anymore because the formulary has dropped it, and put a substitute in place. You can try the substitute drug, but if it doesn’t work well, you have two basic choices. Pay for the drug yourself out of pocket, change insurers (if possible) to one that does cover the drug, or appeal to the formulary to get them to make an exception for you. That last option will require the help of your doctor. Look here, here, or here for advice on how to appeal the insurance companies decision.

Seek help from non-profit groups
7) You can get this information from NeedyMeds, which provides assistance for medications as well as other healthcare costs. You can also call their helpline at 1-800-503-6897. Also check out the Cancer Financial Assistance Coalition, which has a searchable database of financial resources.

Set up a GoFundMe page
8) It’s sad that I have to even list this as an option, but many people are depending on the kindness of friends and strangers to help them pay for their medicines and medical bills.

Travel and Temporary Housing

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I was fortunate to be able to receive my cancer care in my hometown, but I know others are not so fortunate. There are a number of groups that have resources that you can tap into to help pay for your and family members incidental expenses. Below I have links to many of these resources.

The WhatNext website has a page with a number of helpful Tips For Traveling For Cancer Care. They also have a page on Free Flights for Cancer Patients. Finally, they also have a page with advice for other free or discounted services, including gas, headscarves, wigs, housing, legal assistance, and more.

Cancer Care - www.cancercare.org (800) 813-4673
Provides financial assistance in addition to counseling and support.

Cancer Financial Assistance Coalition - www.cancerfac.org (online resource directory)
CFAC is a coalition of financial assistance organizations joining forces to help cancer patients experience better health and well-being by limiting financial challenges 

HealthWell Foundation - www.healthwellfoundation.org (800) 675-8416
The HealthWell Foundation offers financial assistance for under-insured patients with chronic or life-threatening diseases, including cancer. Their financial assistance can help eligible individuals to pay coinsurance, copayments, health care premiums, and the deductibles associated with some medications and therapies. 

Patient Access Network - www.panfoundation.org (866) 552-6729
This group helps under-insured people with cancer and other life-threatening, chronic and rare diseases get the medications and treatment they need. They do this by helping pay out-of-pocket costs. 

Patient Advocate Foundation - www.patientadvocate.org (800) 532-5274
This is a non-profit organization that serves as a liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job discrimination and/or debt crisis matters relative to their diagnosis. They use professional case managers to do this.

Free or Reduced Price Temporary Housing
Many hospitals offer free or reduced price housing for loved ones to stay at when a patient is being treated. Ask about this at the hospital if you have traveled to a city away from your home for treatment.
In addition, here are some websites to check out if that hospital does not have a family member housing program:
American Cancer Society Patient Lodging Programs
Joe’s House
Hosts for Hospitals puts you up with local families, not at a hotel.

Gas Money
The Head and Neck Cancer Alliance offers gas cards ($50; one-time only) to help defray the cost of your medical travel.

Free or Reduced Airfare

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Note: these are services for adults. There are a number of separate organizations that provide flight assistance to children.
All of these services have specific criteria that you need to meet in order to qualify. See the individual websites for further details.

The National Patient Travel Center (NPTC) can help connect cancer patients with the flight resource available for the date and the destination patient needs to travel. They will not charge you for this referral, and also you have the option to contact the organizations and groups providing the flights for the cancer patients directly. They are primarily set up to help patients with rare diseases, and I’m not sure if they provide help to HPV cancer patients.

Angel Flight has a map where you can click on your state and find out if they have pilots in your area who can help you with transport.

The Corporate Angel Network can also help arrange your transportation to a treatment site.

Angel Flight at NIH flies cancer patients throughout the USA, but only for the cancer patients who are involved in a research study or clinical trials.

Angel Wings for Veterans helps veterans seeking treatment (and wounded warriors).

Footprints in the Sky can help provide patients with transportation to and from various cities where patients seek care.

Patient Airlift Services (PAL) covers flights for cancer patients as well.

Air Charity Network is comprised of a network of member organizations who cover specific geographical service areas and coordinate volunteer pilot
flights in the continental United States, as well as Alaska and Hawaii.

Free Flights for Cancer Patients is part of the What’s Next website.


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A "Make A Wish" Type Program for Adults With A Terminal Cancer Diagnosis

Despite our best efforts, sometimes we get the awful news that none of us want to hear. To help ease the pain, there is a “Make A Wish” group that helps to fulfill wishes for adults and their families if they have a terminal diagnosis of twelve months or less, and do not have the financial means to pay for the fulfillment of their dream. The program is called Dream Foundation. You can learn about how this operates, and how you can apply, by visiting their website. They have a subgroup that is focused on fulfilling the dreams of veterans. In addition, they have a Flower Empower program that delivers floral bouquets, fresh-baked cookies, fine chocolates and cards that are hand made by school children and other groups and individuals to people in hospices, cancer centers and their homes. Volunteers prepare arrangements using donated flowers. Flower delivery referrals come from cancer centers, nurses, social workers, hospices, elder support organizations and the community at large. Details can be found on the Dream Foundation website.

MEDICAL DISCLAIMER

Just to be clear: I am NOT a doctor. The information contained in this website is NOT intended as a recommendation for the self management of health problems, medical conditions, or wellness. It is not intended to endorse or recommend any particular type of medical treatment, physician, or treatment facility. Should any reader have any health care related questions, I strongly suggest you call or consult your physician or healthcare provider before looking into other things on the internet. The information contained in this website should NOT be used by any reader to disregard medical and/or health related advice or provide a basis to delay consultation with a physician or a qualified healthcare provider. HPV Cancer Resources disclaims any liability based on information provided in this website.