The following post is from our Public Policy department.

Currently, only 3 to 5 percent of adult cancer patients participate in clinical trials. The leading reason for the low participation is barriers that hinder access to clinical trials. The Leukemia & Lymphoma Society (LLS) is pursuing several avenues to increase patient access to clinical trials so that blood cancer patients can have access to all of the treatment options available to combat their disease.  

In February, patients were asked in this forum to share their personal stories about one of the potential barriers to enrolling in clinical trials: health insurance coverage. Specifically, we asked if, and how, insurance company denial of coverage for enrollment in a clinical trial might have influenced their decision whether to participate in a trial. Now, LLS is searching for personal anecdotes about how patients have been affected by other hurdles to patient participation in clinical trials: transportation and communication.

Some clinical trials are only conducted at one institution, or at locations that require travel on the part of the patient, making transportation to that location for treatment and follow-up care a major concern, and a barrier for participation, for a number of patients.

In New York, LLS is pushing legislation that would break down these barriers to clinical trials access. Bills introduced in Albany by Assembly member Dick Gottfried (A. 1805) and Sen. Tom Duane (S. 4492) would create a state grant program to cover costs associated with clinical trials education and transportation, and patient navigation to find out about available clinical trials. Organizations such as LLS would then apply for these funds to provide financial assistance to patients in need.

LLS would also like to address this issue nationally. To do this we need your help in gaining a better understanding of how many blood cancer patients are being affected by transportation and communication issues. How many more patients would be willing to enter a clinical trial if they simply knew they were being offered? How many know about a clinical trial that would help their disease, but cannot afford to travel to the center where it is being conducted? Would patients be able to participate in a trial if LLS gave financial assistance to help cover these transportation costs that can sometimes be crippling? Please share your experience and thoughts with us.

Like many people around the world, you may be concerned about the current state of the economy and how that affects your family’s finances. If you are struggling financially and have bills for for blood cancer treatment we have some resources that may help you.

Health Insurance – Learn about your rights, COBRA and other helpful information.

Patient Financial Aid – The Leukemia & Lymphoma Society (LLS) provides a small amount of financial assistance to patients in financial need. Application also available in Spanish.

Co-Pay Assistance Program – This program offers help with the cost of insurance co-payments and/or insurance premium costs for prescription drugs for certain blood cancer diagnosis, depending on the availability of funds. Patients must qualify both medically and financially for this program. Also in Spanish.

Financial Health Matters – Download or order this free, informative booklet about how to deal more effectively with some of the financial challenges you may face as a blood cancer patient or caregiver. Also in Spanish.

Cancer Survivorship: Practical Tips for Managing Your Financial and Insurance Issues – Listen to the audio or download the transcript for this teleconference.

If you haven’t already, you may also want to register for The Leukemia & Lymphoma Society Community where you can participate in peer to peer discussions about financial and insurance issues.

We also encourage you to call our Information Resource Center at (800) 955-4572 and talk to one of our information specialists about other potential resources that may be available to you.

The Leukemia & Lymphoma Society (LLS) is an extraordinarily busy non-profit. We’ve got patient programs, research funding initiatives, advocacy programs and so many events that it’s hard to decide which one (or ones) to participate in. Even for someone who works here, it’s hard to fully comprehend the breadth of work that we do on behalf of our mission to fight blood cancers.

We just posted our most recent video that gives the public a chance to see and listen to staff, including our CEO, John Walter, talk about what we’re doing in the fight against blood cancers. It's 10 minutes long and well worth the watch.

Also check out our great mission video that features real blood cancer patients and/or their families.

Share your thoughts in a comment below – did you learn something new about LLS through these videos?

We have many resources in English, but in case you didn’t know we have resources that can be of help to people whose native language might not be English.

Free Materials

Available in Spanish (Español) and French (Français)

Free materials are available in Spanish (Español) - you can download a PDF or order a printed copy - and French (Français), but you can download a PDF only.  When you are on the www.LLS.org website look in the left-hand column and click on Patient Services, then Free Materials, then you will see Spanish Publications (Publicaciones españolas) and French Publications (Editions françaises).

Financial Assistance

Available in Spanish (Español)

Need financial assistance? Spanish-language speakers (las personas que hablan español) can download our Patient Financial Aid application in Spanish (Solicitud de ayuda económica para pacientes) as a PDF. There is also a handy step-by-step guide in Spanish (Cómo solicitar la inscripción en el programa de ayuda económica para pacientes) to help you fill out the application.

Free Newsletters

Available in Spanish (Español)

Visit the following pages in our National Education Programs section for access to our downloadable Spanish newsletters (boletines españoles) available as PDFs.

• Lymphoma News page for NHL Descubrimiento Horizontes

• CML News Links page for Enlaces con información sobre LMC

• Myeloma News page for Noticias sobre el mieloma

Can’t find what you need? Let us know here by leaving a comment or by contacting our Information Resource Center by calling (800) 955-4572 or filling out our online form.

April 15 is fast approaching.  For those of us who haven’t submitted our tax returns to the Internal Revenue Service (IRS), here’s some information about deductible medical expenses that may make tax time less stressful. There’s a whole list of possible deductions from acupuncture to transportation on the IRS website.

Here are a few things that you may be able to deduct if you or certain family members have medical expenses related to a blood cancer or other medical conditions:

• Capital Expenses – These would include special equipment that you’ve installed in your home, or actual renovations to your home that is in direct relation to your condition (for example, widening doorways for wheelchair access).

• Hospital Services – This would include inpatient care at a medical facility (for example, meals and lodging related to medical care).

• Medical Conferences – Being able to deduct this would require that you have attended the conference in direct relation to the patient’s illness, but note that meals and lodging cannot be included.

• Nursing Services – These services can be in home or in another care facility.

• Wig – In general, you can deduct the cost of a wig purchased with a  physician’s advice for a patient who has hair loss that is disease-related.

A few things to keep in mind:

• Use Section A, Form 1040 to report medical deductions. Learn more about how to fill out this form.

• To submit medical deductions, you need deductible expenses that equal more than 7.5% of your adjusted gross income. Let’s say your adjusted gross income is $50,000. You would need to have at least $3,750 in medical expenses to be eligible for a deduction.

• You can only deduct medical expenses that were paid this year. In other words, what matters is when you or your dependents paid for medical procedures or devices, not when you received them.

• A list of things that you will not be able to deduct can be found on the same page as the list of expenses you can deduct.

Even if you have already submitted your tax return to the IRS for 2007 this is information that can be of help for next year. If you expect to continue to pay for medical expenses this year, make sure you keep your records handy for when you meet with your accountant or when you fill out your taxes.

Find more information about your finances and health matters.

Have you already turned in your tax return? Do you have ideas to share about organizing your tax receipts, especially medical expenses?