The format is wrong on the papers from New Orleans, shall redo ASAP. Susan, May 10, 2005

Barbara Schwerin

Cancer and the Law: What You Need to Know


      Hello everybody.  While we’re getting the slides up, I just want to let you know that there’s going to be a handout available outside that lists the agencies that would be enforcing the employment laws and the department of insurance for your state.  So that will take care of insurance and employment questions that you might have.  We’ve got that listed state by state and it will be outside.

      I direct the Cancer Legal Resource Center, which is a joint program of Loyola Law School and the Western Law Center for Disability Rights.  We’re based at the law school in Los Angeles. 

      What I want to talk about today is a lot of different laws because what I’d like to leave you with is some information about what your rights are so that you can know what laws and what resources may help you so that you can educate yourself, because  power and knowledge themselves are important as you go through this process.

      Fortunately, there are many sources to help you and really, you’re not alone.  There are a lot of different agencies that can provide information for you.

      I want to tell you a little about the Cancer Legal Resource Center (CLRC) so that you’ll know that it’s here as one of those resources for you.  We we’re formed in 1997 and we provide information and education on all types of cancer-related legal issues.  Primarily, most of the calls that we get are about insurance, employment and government benefits.  We also a small percentage of calls on estate planning issues, real estate, landlord/tenant, all kinds of things that may impact people when they have cancer.

      We have really become a resource for cancer patients, for their families, for caregivers, for healthcare providers and employers.  I had been in practice for ten years when I started this program.  I’m also a marriage and family counselor.  We are based on an education model, not a litigation model.

      I did litigation for ten years, primarily business and commercial litigation.  It serves a purpose.  But I think, for most people who have cancer, the last thing they need in their life is a lawsuit.  What we really try to find are practical ways for you to get what you need.

      We received 2800-plus calls last year.  We’ve had over 2000 calls this year.  We’re averaging about 300 to 350 calls a month at the Center.  Our telephone assistance line is one of the services the CLRC provides.

      When people call, we are staffed primarily by Loyola Law students and they are just phenomenal.  I would say 95 percent of them come to us because of family experience with cancer.  They’ve got a lot of empathy and compassion.  One program where I made a presentation, we were introduced as a place where people can get good solid information and education and where they are always treated with kindness and dignity.

      The second part of our program is really speaking at other programs like this.  I speak at probably 70 or 80 programs a year that range from conferences like this to small support groups where the format follows a very informal questions and answer basis.

      At the CLRC, we don’t represent anybody.  We don’t provide any legal advice.  There are times when people need more in depth assistance that we’re able to provide, and we have a volunteer panel of attorneys and other professionals who jump in when we need them.

      We’re throughout California, although we’re discovering 40% to 50% of our calls are from outside of California.  We do our best to try and find local resources for you.  One of the things that we’ve done is to provide a handout with the address and telephone number of the law enforcement agencies and the departments of insurance for all the states.  We do the best we can with calls from outside the state.

      What are some of the laws we want to talk about?  I am covering several laws here today.  Keep in mind that in your state, you may have different laws and you may have some more protective laws.  But these are the laws that are basically going to cover people throughout the country.  I’ll try and give you some highlights during this on how some laws may be different.

      We’re dealing with the Americans with Disabilities act, the ADA.  The Family Medical Leave Act, which some of you have used.  The Health Insurance Portability and Accountability Act?  Then we’ve got COBRA.  SSDI and SSI are the two main plans with the Social Security System.  Then we’ll talk briefly about navigating managed care and how to get through some of the HMO systems.

      The Americans with Disabilities Act is a federal law.  It was signed into law in 1990 by George Bush, Sr.  It was really designed to level the playing field so that people with disabilities were not discriminated against in the workplace based on their disabilities.  It applies to all phases of the employment process.  It basically applies to you as you walk in the door for that interview.  Hiring, firing, benefits, promotions, layoffs, it applies across the board to employers with 15 or more employees.

      It does not apply to state employees who are concerned they are discriminated against by their state government for monetary damages.  They may be entitled to injunctive relief, which is basically saying, “I want my job back.  I don’t want you to do this to anyone else.”  They’re not going to have any coverage for monetary damages, but there may be a state law that may provide protection.

      You have to be what is called a “qualified individual” with a disability to get this protection under the law.  There are three ways to show you are disabled.  The first is by having a physical or mental impairment that substantially impacts a major life function – walking, talking, breathing, caring for oneself – the tasks of daily living or working.  We found that when people were going under this law that they are usually more successful if they’re able to show something other than working.  They can show something in a major life function, a bodily organ or something like that, that’s going to substantially impact a major life function.

      The second way someone can get protection under this law is to show that they have a history of impairment; if someone had cancer and feel as though they’re having a negative reaction in the workplace because of that history.  It is one of the other ways someone can show they are disabled.

      They can also gain protection under the ADA by showing that they are regarded as having an impairment.  For instance, someone has a non-disabling impairment but the employer somehow sees the person as being disabled, causing a negative impact on the workplace.

      You also have to look at the disability in its corrected state.  How is someone doing after they’ve had surgery or after they’ve had radiation?  It’s supposed to be done on a case-by-case basis, looking at each person as an individual.

      You also have to be qualified.  You have to be disabled and a qualified individual, which means you can perform the essential functions of the job without reasonable accommodation.  You have to look at what are the essential functions versus the marginal functions of the job.

      It can really help if you have a written job description.  Not all employers provide that, and it’s not something that an employer is required to do.  But it’s really helpful if you do have that.

      You have to look at reasonable accommodations.  An employer has to provide it so long as it’s not an undue hardship to the employer.  It can be pretty tough to show that these are undue hardships.  It might mean that the employee is going to need to take leave time, but they’re able to apportion the work out or someone else can come in as a temp worker.  It might be reassignment to a vacant position, light duty, flexible hours.  It really can be something that can be tailored to fit the job situation.  It’s meant to be a dialogue between the employer and the employee to see what they can work out.

      The employee generally has to initiate the request for the reasonable accommodation.  It’s not a mind reading act for an employer; you basically have to ask for it.  What you ask for may not be what you actually get.  It may be something else that can be done that’s less expensive, which is quite possible.  But you need to have the dialogue between you and your employer.

      Every request should be kept confidential.  Basically, if you ask for a reasonable accommodation, the supervisor and possibly an HR person will need to know about it.  It’s not something that’s supposed to be talked about or shared with their colleagues.  You may choose to share it with your coworkers, but it’s not something that your employer should share with anyone else.

      I think sometimes it’s difficult for employers because somebody may be taking time off for treatment and employers can’t disclose why that person is out, even though many of us may probably choose to disclose our medical condition to coworkers for their support.

      Your state may provide greater protection, but the ADA is the base.  States cannot provide less than that, but they may be able to provide more.  I just want to give you a quick example of how some states have provided greater protection beyond the ADA.

      In California, we have the Fair Employment and Housing Act which covers more employers because it applies to employers with five or more employees.  The definition of disability is broader than under the ADA.  People need to show just a limitation of major life function.  It does not need to be substantial.  In California they don’t look at corrective or mitigating measures unless the mitigating measure itself goes to limit your life activity.

      California also provides specific protection for people with a medical condition that is defined as any health impairment related to or associated with a diagnosis of cancer or a record of a history of cancer.  If you’re in this type of situation, you need to know what laws apply in your state and if they provide you with greater protection than the ADA.

      For someone who’s having problems in the workplace, these laws are enforeced by government agencies.  You should contact the Equal Employment Opportunity Commission (EEOC).  The EEOC is the government agency that enforces the ADA.  State agencies enforce your state law and the numbers for those agencies should be available through the EEOC or in the handout provided.  You can also contact the Job Accommodation Network (JAN), a government program that provides practical information about reasonable accommodations in the workplace.  You can also call us at CLRC and we can walk you through the different systems.

      If someone is looking for a new job, you don’t need to disclose your medical condition unless you need a reasonable accommodation.  It’s private information; you really don’t need to say anything. 

      Your employers also cannot ask you about your medical condition.  They’re basically limited to asking you if you can perform the essential functions of the job with or without a reasonable accommodation.  If someone has a visible disability, they can ask how and they can ask a potential employee to demonstrate.  That’s it.  Employers are very limited regarding what they can ask.  Usually someone asks about those checklists you have to fill out, all the forms that ask you about your medical condition when you apply for a job.  Employees are pretty savvy and they know that they’re not supposed to be asking this stuff.  Most employers abide by that in the hiring process.

      An employer can make a conditional offer based upon someone passing a medical exam, but only if it’s required of everyone entering that position.  They can’t single someone out and require one person to pass a physical and not the others.  They have to be treated uniformly across the board.

      An employer can rescind an offer of employment only if the medical exam shows that you cannot perform the essential functions of the job with or without a reasonable accommodation.

      As I said earlier, all requests under the ADA are to be kept confidential.  They’re supposed to be kept in a locked file separate from your personnel file.  It’s on a need to know basis only.

            Several of you have used the Family and Medical Leave Act.  This is a federal law that was one of Bill Clinton’s signature pieces of legislation.  This law was designed to balance the needs of family and the needs of business.  The Americans with Disabilities Act applies when you walk in the door or apply for a job. 

      This law applies to employers with 50 or more employees who live within 75 miles of the work site.  You have to have worked for the employer for at least one year and have worked a minimum of 1250 hours in that year.

      This law allows employees to take unpaid leave for joyous things like the birth and adoption of children, but it also allows employees to take up to 12 weeks of unpaid medical leave to care for a seriously ill spouse, parent, child, or the for the employee’s own serious medical condition.

      The FMLA is unpaid leave, but it’s job protected leave.  You return to the same or an equivalent position and your benefits remain intact.  This is really crucial for so many people.  If your employer’s been paying 100% of your health insurance premiums, the employer continues to pay 100% during your 12 weeks of FMLA.  If you pay a portion of your insurance and your employer pays a portion, the same relationship continues while you’re on FMLA.

      This law also allows people to take leave time as they need it.  Some people take the entire 12 weeks of leave at once.  Others will take off for a period and then stagger the remainder of their 12 weeks as needed for treatment.

      What happens a lot of the time is that someone takes 12 weeks under the Family and Medical Leave Act and then takes an additional, extended medical leave as a reasonable accommodation under the Americans with Disabilities Act or under their own state law.  We find that sometimes you can tag team the two laws so they work together.

      Let me switch over now into the health insurance arena because getting and keeping health insurance is of paramount importance for people who medical conditions and even for those who don’t have medical conditions.  It’s something that’s so important.  COBRA is a federal law tat allows you to keep your group health insurance when you would normally lose it.  It applies to employers with 20 or more employees and its generally going to last for up to 18 months.  Some states have provided additional protections.  For example, in California there’s a state law that applies to employers with two to 19 employees.  So basically everyone in California who has group health insurance is able to keep that for a period of time.

      The other that California has is a new pilot program.  Instead of giving 18 months, it’s now 36 months.  For people are taking out COBRA or the California version of it, Cal-COBRA, after January 31, 2003 they will generally get to keep it for 36 months.

      When you look at different states throughout the country, we find no consistency, but do find that some states have a law similar to Cal-COBRA that’s applied to employers with less than 20 employees.  It may last for different amounts of time, depending on the state.

      COBRA generally lasts for 18 months.  It can last longer if Social Security determines that someone was disabled within the first 60 days of electing COBRA coverage; they may be allowed to keep it for an additional 11 months for a total of 29 months.

      There are reporting requirements with this extension.  You need to let your employer or the health plan administrator know once you’ve been determined to be disabled.  There’s a certain time period you have to let the health plan administrator know in order to get this 11 month extension, and it has to be before the 18 months of COBRA expire.

      If people don’t let their health plan administrator or COBRA employer know, the insurance will be canceled and it’s usually very difficult to get it back.  Make sure that if you’re in this situation that you adhere to these deadlines.

      I think this is also the first time people really get a sense of how expensive insurance is.  This is when we get to pay the whole thing, plus 2% for administrative needs.  It can be very costly. We get a lot of calls from people saying they can’t believe that their employer is increasing the rates.  That’s what the employer has been paying.  Keep in mind that your state may have a similar law for employers with less than 20 employees that allows you to continue with your health insurance coverage.

      The Health Insurance Portability and Accountability Act of 1996 is a great federal law.  This law is a really good way for people to keep their health insurance and basically keep rolling from one plan to another.  A lot of people felt they couldn’t change jobs because someone on their health insurance plan, either themselves, a spouse, or a dependent, had some sort of medical condition that wouldn’t be covered because it would be a pre-existing condition exclusion.

      This law did three main things to protect people going from insurance to insurance.  What happens if you receive credit for the time you had health insurance and this creditable coverage goes with you from one plan to the next?  So say you had health insurance for five years with Employer A and you’re going to Employer B.  You take the five years of that creditable coverage with you when you go to Employer B.

      Assuming Employer B offers health insurance, you’ve got five years of creditable coverage or you have 18 months of creditable coverage or two years, whatever you had at that prior job.  That creditable coverage goes towards eating up any pre-existing condition exclusion that could be imposed.

      This law also limits the time the pre-existing condition exclusion can last.  Before this law, it seemed as though they could last indefinitely.  Now it’s 12 months maximum; some sates have less than that.  Once again, it’s a federal law.  It sets the minimum guidelines but states can provide greater protection.  In California, for example, pre-existing condition exclusions generally don’t last longer than six months.  It’s 12 months federally but some states have additional protections.

      Finally, this law will only allow insurers to look back six months to see if a pre-existing condition exclusion can be imposed.  If someone joins a group plan and had no prior health insurance, the group plan can only go back six months to see if a pre-existing exclusion can be imposed.

      So say someone hasn’t had treatment, actual or recommended, for a six month period.  Even if someone has had no health insurance going into an employer’s plan, they could not imposed a pre-existing condition exclusion for a particular medical condition.

      Say somebody had insurance for four months and they’ve had treatment.  Federally, the couldn’t impose a pre-existing condition exclusion of longer than eight months, which would make up the total twelve month period.

      What you will hear is to keep continuous coverage.  You don’t want what’s called a substantial gap in coverage, which is either 62 or 63 days.  You want to keep rolling from one plan to another.  And creditable coverage can be COBRA, a similar state plan, individual private insurance, Medicare, Medicaid, other group insurance.  What you want to do is to keep rolling from one plan to another.  You really shouldn’t have to meet another pre-existing condition exclusion if you do this.

      This law has really worked beautifully since everyone got on board.  It was a steep learning curve, but we get calls now mostly from people who are thinking of changing jobs and are concerned about getting health insurance.  The employers have pretty much gotten on board with this and it seems to be working quite well.

      If the new employer offers insurance and there’s a waiting period, pick up your COBRA or some other state insurance to maintain your group health insurance during the waiting period.

      The other thing that’s important is what happens to people who don’t have access to other group insurance.  There not going to get a new job and they probably can’t get insurance in the individual market because they have to go through medical underwriting where the insurance company can look at your medical situation and your medical records.  The insurance company decides whether to cover somebody or to cover them at a higher premium.  This law was really designed to provide some protection there.

      You have to, among other things, exhaust your COBRA or similar state insurance, not be eligible for Medicaid or Medicare, not be eligible for other group coverage and apply no later than, once again, 62 or 63 days after the loss of coverage.

      So policies can vary from state to state.  But HIPAA is a federal law.  The states were able to implement the group to individual as they chose to do that.  Some states offer it as a high-risk plan; other states offer different plans.  So it varies from state to state.  Usually, the Department of Insurance will know what plans are offered.  The premiums can vary, and they can be quite high.  But it is a sure way to keep your health insurance.

      When you call the insurance companies about these plans, I would suggest that you ask for the HIPAA or Guarantee Issue of Federally Insured Plans because sometimes the insurance companies will tell you that you’re not eligible unless you use those buzzwords. 

      Government benefits.  This is another big area.  How do you get some money coming in?  There’s two main plans through the federal government and a lot of you seem quite familiar with them.  We’ve got Social Security Disability Insurance on the one hand and supplemental security income on the other hand.  Same definition of disability for both.  Physical of mental impairment that’s expected to last 12 months or longer or be considered terminal.  So you’re really looking at the same definition of disability.  After that, they’re totally different.

      As you can see SSDI is based upon your work history.  Have you worked enough quarters and enough years?  Is it recent enough?  Is it long enough so that you have the requisite history?  You should receive a form from Social Security that tells you the estimate you can get if you retire at age 62, age 65, age 70 and if you became disabled.  So you can kind of use this as a guide.  Does it seem like they’ve included all of your employment history?  Is that in their records?

      If you qualify for SSDI, you basically collect early what you would have collected if you worked to age 65 and retired.  You’re also eligible for Medicare for two years later, and that’s where you want to look at COBRA extension.

      There is a five month waiting period to apply for Social Security Disability Insurance.  There’s a two year waiting period for Medicare, for a total of 29 months.  COBRA’s 18 months, the 11 month extension is 29 months.  So if everything goes smoothly, you should go seamlessly from COBRA to the COBRA extension to Medicare.

      We find that this can be a tough system for some people to get through.  They go through what’s called the 5 Step Sequential Analysis.  You can get turned down at several points along the line.  We really suggest that if you do get denied that you go to the next step, which is a request for reconsideration.  If you still get denied, the next step is a hearing before the administrative law judge at which point a lot more people get approved.

      We really suggest that if you’re denied on the grounds that you’re not disabled that you go through the appeals.  If you’re denied on the grounds that you don’t have the work history, there may not be any way to fix that unless you keep working longer.

      Supplemental Security Income.  Same definition of disability , but after that, it’s totally different.  It’s not based upon work history, it’s based upon someone’s income and resources.  In resources you can have $2,000 for a single person, $3,000 for a married couple.  You income must be very, very limited.

      If someone is eligible for SSI, they are generally eligible for Medicaid immediately.  However, the eligibility, the benefits and the services can vary from state to state.  Medicare is a federally funded but state administered program and the benefits that people receive can be dramatically different from state to state.

      If somebody is on SSI and receiving Medicaid and thinking of moving to another state, they need to look and see if residency is required or if there is going to be an interruption of benefits if they’re going to be moving.

      Let’s look at the general structure of managed care.  HMOs, PPOs, Point of Service - I’m sure you’re all pretty familiar with navigating through this part of the system.  You’ve got HMOs with participating doctors and hospitals.  You select a primary care physician and doctors and hospitals from within the participating group.

      If you want to go out of this network and don’t get approval in advance, you’re probably going to be stuck with the bill.  So it’s really important if you’re trying to go outside to other specialists that you talk with your plan about getting outside approval and getting pre-approved.  There may be limited choices with an HMO plan, but the cost is usually going to be less.  I also like to let people know at this point about staff models of HMOs versus IPAs, or independent physician associations.  Staff model is more like a Kaiser model - depending on which state you’re in, you may or may not be familiar with Kaiser.  But that’s where the doctors work for Kaiser and everything is pretty much all in one place – specialists, medical offices, your hospital, your labs - all of that is usually in one place.

      Independent physicians’ associations are where the doctors really form a medical group and they may be in one building.  They may have specialists in other buildings.  They’re going to be working with the hospitals in your community.  You may go for lab work in one place, to your doctor in another place and the hospital may be across town.

      If you find that you’re being denied treatment for something under an IPA model, you need to find out who’s denying the treatment.  Is it the health plan itself?  Is it the medical director of the IPA?  Because that’s who you need to talk to so you can try to get that decision turned around.

      PPOs, Preferred Provider Organizations, usually many health care providers and hospitals to choose from.  You can generally go to any of them.  You usually don’t need referrals to see specialist.  You’ve got more choices.  It’s usually considerably more expensive.  I just see the continually changing landscape of deductibles and copays.  Coverage keeps increasing or changing, it seems, every six months to year.

      I have a PPO and we’ve gone from a $30 copay to a $40 copay to a 40 percent copay to a 30 percent copay to a $25 copay.  It just seems to go back and forth and the deductibles have been larger over the years.

      On your PPO, though, you will have what’s called a maximum out of pocket.  That can range in your plan – I usually hear anywhere from $2500 to $4500.  Once you’ve spent the maximum out of pocket, your health plan pays 100%.  It’s sometimes tricky figuring out what actually goes toward that maximum out of pocket.  Usually your copays and prescription drugs don’t count.  If you think you’re getting close to that out of pocket maximum, it can be in your best interest to find out how much it is and whether you’ve met that.  I’d rather see money in your pocket that not.

      The other “wonderful” thing we have with PPOs are EOBs, or Explanations of Benefits.  Your Explanation of Benefits forms list your doctor’s bill, which is “X” amount of dollars, and he is a preferred provider; your doctor sends you a bill for “X” amount.  Let’s say it costs $100 for an office visit.  The doctor’s office will submit it to your insurance company.  A few weeks later, you’ll get an EOB that shows $100 will get billed.  Let’s say the doctor’s contracted rate with the health plan is $60.  Therefore, $40 has just been written off.  Out of that $60, if you have a 20% copay, you would pay $12 and the health plan would pay $48.  However, you want to wait until you get the bill for the $12.

      You also know that when you go in for treatment that your stacks of bills can be inches high, and they’re not always right.  I encourage you to match up your doctor’s bills with your EOBs.  Also make sure that you’re billed for the services you received.  If you’re not able to do it, hopefully someone can help you.  You’re looking at things that may be significant amounts of money, so you want to try and match those up to make sure you’re paying the correct amount.

      I worked with one woman who just felt like the amount that had been written off by the health plan and what was paid to the doctor was horrendous.  She was embarrassed to go in and see the doctor because so much was written off.  I said to her, “You know, this is the doctor’s contract.  You don’t need to go in and pay more money.  This is what the deal was for.  And that’s really all you have to pay.”  But keep an eye on that.

      I had shoulder surgery a few years back and went in for a second opinion.  I got a bill for the consult which was just fine, but then I got a bill for x-rays which weren’t done.  So I called the billing office and the woman said, “Well the doctor billed for it.  The doctor put it down.”  And I said, “Well, I was there.  Just because the doctor wrote it down doesn’t mean it happened.  I would know if I had x-rays taken.”  Six months later, it got straightened out. 

      If you’re not able to do it, get someone that can help you try and figure it out.  I know some people keep the whole thing in notebooks and keep every bill tabbed.

      Point of Service Plans are a cross between PPOs and HMOs.  They don’t seem to be used too much, but basically you can use the HMO for general needs.  When you want more flexibility, you go to a PPO.

      Most of us get health insurance through our employers.  Basically, it’s a benefit of employment.  But, it’s a contract that your employer has entered into on your behalf.  It may be that your employer entered into one contract and you have one benefit plan to choose from.  It may be that your employer entered into several plans and you get to choose.

      It’s really important that you look at the summary of benefits and the evidence of coverage.  What does the plan provide?  What does it exclude?  You are bound by the terms of the plan and you need to look at that.

      If these are options, compare the cost, the coverage, the benefits and the exclusions and pick out what’s best for your medical situation and your family’s financial situation.  If you’ve got a choice of several plans and you see that there are exclusions right in that plan that might eliminate treatment that you need and you have other plans you can choose from, please look at those other plans and try to pick what seems best for you.

      HIPAA, the Health Insurance Portability and Accountability Act, provides protection during open enrollment so you can change plans.  Those same laws that apply as you go from employer to employer also apply when you transfer to different plans within the same employer.

      The other way to get health benefits is going to be either Medicare, which is through Social Security Disability Insurance or turning age 65.  Or through Medicaid, being disabled and based upon income and resources.

      We’ve got standard Medicare which is Medicare as most people know it.  Part A is basically in-hospital coverage and Part B is basically your physician services, therapist services and outpatient hospital services.  Medicare is generally going to pay 80% of the Medicare-approved charges.  The Medicare recipient pays the other 20%.

      Medicare doesn’t cover prescriptions, although there are some exceptions for oral chemotherapy drugs.  It also does not cover custodial long term care in the home or in a nursing facility.  There are a lot of people who think Medicare is going to cover that if they’re not able, if somebody either comes into the house or they go into a long term care facility.  Medicare has some very limited coverage for that.  Long term care payments are basically for people who have long term care insurance through a private company or Medicaid for long term care or you pay out of pocket.  Medicare is not going to provide for long term care in a nursing home.

      What are the prescription drug plans?  A lot of pharmaceutical companies have come up with plans that will help people out.  For example, in California we have a plan where if you receive Medicare and the pharmacy fills prescription drugs under a MediCal contract, the pharmacy has to provide your Medicare drug prescriptions at the MediCal rate.  The other pharmaceutical companies may also provide plans for reduced costs on prescription drugs.  If you know the maker of your drug, contact them and see what programs may be available to you.  Novartis is probably the pharmaceutical company for those of you here today to contact.

      For those of you who are veterans, we have spoken to several that keep their doctors and hospitals through their private plan.  They establish a medical relationship with the VA to get prescription drug coverage and the pay about $3.00 to $5.00 for a prescription.  Some even get them for free.  If you’re eligible for that benefit, take advantage of it.

      Finally, we have programs for those who are low income and need assistance with their prescriptions.  You should speak to your physician about that.

      Medicare HMOs are pretty big in California.  My mother lives in South Carolina and she’s never heard of that.  Basically, it works very similarly to a standard HMO, but there is usually some prescription drug coverage available.

      There’s a new interim Medicare drug plan.  One of the big things that’s been going on is the fact that there has been this big gap with no prescription drug coverage for people with Medicare.  I know it doesn’t apply to some of you here, but let me just go over it really quickly.  This plan began in early spring of 2004.  The discount cards are being offered by the private companies until the regular Medicare prescription drug coverage starts in 2006.  For the interim plan, there’s an annual enrollment fee of no more than $30.00 and you’re supposed to be able to save 10%, 15% or maybe up to 25% on certain drugs.  Enrollment is optional; it began in May 2004.

      Going back to our interim drug plan, to compare the cost of your prescription for the different plans, you can call Medicare at 1-800-MEDICARE or go to their website at  You can only change plans once per year.  The plan rates can change weekly.  They’re concerned about the potential for bait and switch.  If the rates go up a lot, contact Medicare.

      From what I’ve read, the formulary has not been changed as had been feared.  Some of them have gone down, in fact.  If you have a Medicare HMO, the card is basically going to be limited to their health plan.

      Financial assistance in the amount of $600 is also available to help pay for prescription drugs if you have an income of less than $12,569 for singles and $16,862 if married.

      There haven’t been as many people as hoped for applying for this plan.  Last I heard, if you have Medicare and are eligible for assistance, they are just sending the cards out and you have to call and activate them.  They’re really trying to get more people enrolled in this plan.

      The new Medicare drug plan starts January 1, 2006.  You will pay a monthly premium and have a $250 deductible.  Medicare with then pay 75%, up to $2250.00; you will pay the other 25%.  Between $2250 and about $5100 – this is the “donut hole” they’ve been talking a lot about in the news – you pay 100% of your drug cost in that range.  After you’ve paid $3600 out of pocket, Medicare will pay 95% of your drug costs.

      There will be some extra help for people with low incomes and fixed assets.  The income levels will be set next year and there may be a small copayment for prescriptions.  There will be some help to aid in paying the premiums and deductibles.

      As far as clinical trials go, Medicare will pay for the routine cost if you take part in an approved clinical trial.  We suggest you speak with your doctor if you’re interested in that.

      Medicaid goes along with SSI, Supplemental Security Income.  It’s generally going to cover doctor’s visits, x-rays and lab tests, and it does include prescription drug coverage.  Some people will qualify for both Medicare and Medicaid based on their income.  The money is coming in from Social Security Disability Insurance may be less than what the Supplemental Security limits are.  At that point they get both, and they get Medi-Medi which is Medicare and will cover most of the doctors as well as Medicaid, which includes the prescription drug coverage.

      In terms of navigating through managed care, there are laws in most states that provide some protections or even greater protections for consumers.  We really want you to be an informed consumer.  I really believe that in today’s day and age you need to be you own best advocate or have the ability to be an advocate for a loved one.

      I just want to give you some examples of patient protections.  It’s really hard to talk about this because this is generally state law and varies greatly from state to state.  You need to find out what protections are offered by your state.  Some states entitle you to second opinions.  If you have an HMO, you might not be able to do that out of network.  If you’re looking for a second opinion and if you want to go out of network, go to a teaching hospital and go to a specialist who is “the name” in that field, as are the doctors we have here, and work with your health plan to see if it’s possible for you to get a referral out of network.  Try to get the approval to go out of network in advance.

      Some states also have coverage for clinical trials.  In California coverage is limited to cancer clinical trials.  It’s different in other states, if other states even provide that coverage.  In California, at least, it’s limited to trials that are regulated by state and government agencies.  They look for reputable clinical trials so they can insure the people participating will hopefully benefit from these trials and not be harmed.

      Some states have an independent external review of denials by insurance companies when something is denied on the grounds that it’s not medically necessary or that it’s investigational or experimental.  These independent professionals are not paid by your health plan and do not have any financial interest in your health plan.  Someone else gets to look at this denial and see if it was an appropriate denial.  It depends on the state how many denials get overturned or not, but it’s certainly something to look into if you’re in this situation.

      Some plans have coverage for hospice care.  It’s really important for you to look at your plan’s evidence of coverage or summary of benefits to see if this is covered.  You can also contact your state Department of Insurance; they may have some answers and may possibly be able to send you some information.  There are probably also some consumer agencies in your state that can provide information for you.  It’s a state law, protections can dramatically vary depending on which state you live in.

      There are practical ways to avoid problems in the first place.  First, you should communicate with your healthcare provider and ask the doctor to explain the reasoning behind these particular decisions in regards to your care.  I know the doctors that I’ve met over lunch are incredibly articulate and communicative, but doctors don’t take Communications 101 in medical school, and a lot of them are not always the best communicators.

      The doctors I meet go into health care because they really want to help patients and
”do good.”  That doesn’t always mean they convey that well.  Sometimes I think it can be a challenge for you to talk to your doctor and really communicate with him/her.

      Bring a list of written questions and write down the answers.  It can be tough information to take in, and it also can be a lot of information to take in, so I think it can help if you write it all down.  Sometimes doctors find it helps to look over the questions in advance and have a heads up as to what they’re looking at when you come in.

      Schedule your appointment for a longer period of time.  Let the receptionist know that you have a lot of questions and you really need some extra time to see the doctor.  A lot of HMO plans allow you about 15 minutes and you may need more than that.  Bring a family member or friend to support you and help you out with this stuff.

      Since I don’t do doctors, needles, hospitals or blood, when my orthopedist mentioned surgery to me, I was ready to run the other way.  But my husband came with me to every appointment after that because I just couldn’t take it all in.  I think it can be very helpful to bring someone with you.

      If your health care provider agrees, bring a tape recorder with you.  I’m amazed at how many doctors say it’s fine to bring a tape recorder to an appointment.  That way you can go home and listen to the information you need.  One woman had breast cancer and her family taped everything.  When people would ask how she was doing, they’d just hand over the tape instead of explaining it.

      I think it can also be helpful to maintain copies of your medical records.  There’s usually a mechanism in each state for you to have that.  I think a lot of you might have several different specialists, and they may not be talking to each other all the time.  I think that if you have copies of your test results, lab work, MRIs, etc., that it can be a really big help.

      When you go on vacation, take contact information with you.  Who your doctor is, who they can be reached, what your diagnosis is, what your protocol is.  That way, if something does come up, you can get the care you need while you’re gone.

      Keep a written log of your communications with your health plan.  Write down the dates and times of your communications, as well as the first and last names of the person you spoke with and their title.  We’ve had one guy who was a fabulous advocate for his dad, he just did an outstanding job.  He would always ask what their qualifications were when they were making decisions about his dad’s care.  They didn’t like it, but he got approvals for his dad’s care pretty quickly.

      If you send stuff to your health plan, don’t send the original; if you do, make copies.  Send everything certified mail, return receipt requested.  If you fax something, make sure you receive confirmation that it was actually received.

      If you’ve been denied treatment on the grounds that it was not medically necessary, have you doctor send a letter to the health plan indicating why it is medically necessary.  Your doctor can be your best ally in cases like this; he/she wouldn’t order the treatment unless he/she believed it medically necessary.

      Make friends with the doctor’s support staff, such as his receptionist, etc.  A lot of them are really overworked and have a lot going on.  You want to establish a friendly relationship with them so they can get that letter out the door.

      Review the grievance and appeals process for your health plan.  I really think persistence is helpful in being the “grease for the squeaky wheel”.  One woman, as she described it, was relentlessly cheerful.  She was not going away and they knew it.  She was really nice.  To be honest, you want to be nice; if you’re hostile and start screaming and yelling, they’ll hang up the phone and won’t want to talk to you.

      It’s really about relationships.  When I was in private practice I just kept talking to people and I got more information that I probably should’ve gotten without some actual paperwork, just because I was nice and they kind of wanted to help me out.  I don’t know what your experiences have been, but I think that generally you can try to establish a relationship and be persistent.  When you’ve got buzz words, they realize that you know what you’re talking about, and that can be a real help also.

      I’d like to end with a couple of favorite statements I have.  Peter Greenberg is a travel editor on The Today Show, and he’s always ranting against the airline industry.  He always says, “Never take no from someone who doesn’t have the authority to say yes.”  So if you can keep going up the chain until you can talk to someone who can say yes, you may not get what you want, but you want to get to someone who can give you that.  I moderated a panel several years ago and one of the doctors on the panel was a wonderful patient advocate, and I love this line of his: “Never have a serious discussion with your doctor when you’re wearing a paper gown and your doctor isn’t.”


      The one boring question that came up before Barb ever came up here was that for this group, Medicare doesn’t cover the Chromogranin A test.  Every expert in this room will tell you that is the sine qua non for monitoring how carcinoid patients are doing with their drug therapy, tumor dose, etc.  I’ve written nasty letters, I’ve written nice letters, I’ve attached all the peer review information and we keep getting turned down.  What do we do now as a group?  I mean, here we’ve got a bunch of people who have a bunch more of people who are friends, plus their doctors, plus all their legislators, what do we do?


      Is it private insurance companies?




      That’s weird.  Usually Medicare sets the standard.  When Medicare starts to pay for it, the other insurance plans come in.  Here’s where you convince Medicare that this is the standard of care, and this obviously needs to be the standard of care.

      The only thing I can suggest is that there is power in numbers.  You guys should write to your legislators and, if you have a personal connection with a legislator, try and personally talk to them.  Get someone to talk to them that has been impacted by carcinoid.  If someone has a personal connection with a legislator, that’s the way to get them to take it and run with it.

      The other thing is to write to CMS, write to Tommy Thompson.  If he starts getting inundated with letters it may have an impact, or it may not.  I’m thinking of things that we usually do as far legislative advocacy goes when I do this quite a bit for the American Cancer Society.  I absolutely love doing it.  It’s really very energizing.  But there’s power in numbers and your personal stories.


      Anybody have a connection?  A brother or sister, etc., a senator or representative?  It sounds like we need to get somebody out there who’s willing to take this on for tumor patients with rare cancers and maybe get Jamie or Mary Landrieu to do that type of thing.  Once we have that, put that out on all the support groups , leave the name, give a sample letter and have everyone write the same letter.


      We have continuous coverage and are filing an application for new group insurance.  Do you list your pre-existing conditions?  Can premiums be raised after you reported your rate because you listed on the application?


      Generally, it’s going to depend on the company of what the plan is or the size of the employer as to whether you’re listing anything on your medical.  A lot of this is state regulated, so it’s kind of tough.

      I don’t know what state this person is in, but I know in California the form would be small group employers like two to 11 and then 12 to 50.  It’s a form that has pretty minimal information on it.  You can seal it so your employer can’t see what’s inside.

      They can’t single you out for what your medical condition is – they can’t raise the rate for you particularly.  Your premium is usually based on your age and geographic location.  They’ve got to treat similarly situated people the same.  I’m assuming that somebody was quoted a rate because they’ve got other people on the plan or they are cognizant of that.  I think it’s going to be based on state law as to whether that can change or not.


      If you retired before your cancer was diagnosed, is it too late for pension payments to be arranged?


      That is going to depend on what your agreement is with your employer.  Usually it’s going to be a contract that you had with your employer for what they actually provide on pension benefits and what’s eligible.  It’s usually going to be in some document that you have with your position of employment.


      I understand Medicare is going to stop payments for all or possibly some cancer treatments in 2006.  Is that true?  They currently pay for Sandostatin given in the doctor’s office; will that cease in 2006?


      What I’m hearing is that a lot of the outpatient care that’s been done in the doctor’s offices is not going to be covered, and it’s going to be moving people over to hospitals and possibly more of an in-patient type setting to get their care.  That’s what I’m hearing and the doctors are not happy about it.


      This person was discriminated against on the job and filed an ADA lawsuit seeking an EEOC settlement who said it was discriminated.  It went to court.  The judge threw out the EEOC ruling.  He lost the case and she lost the case and the job.  What could I have done differently?


      I can’t answer something like that.  I can speak to someone afterwards if they want to talk to me.



      What test information does the doctor’s office require you to give in advance of a visit, i.e. blood test, x-ray reports, etc.?


      I’m just guessing it’s some sort of an informed consent kind of thing.


      Well, that would be in the office.  This seems like in advance of a visit.


      Well, state law is involved in a number of procedures like that.


      What about a secondary cancer policy that will not acknowledge or cover Sandostatin for treatment of Carcinoid as cancer?  Is that legal?  Carcinoid is clearly a cancer.


      You need to look at what the terms of the policy are.  I’m guessing it’s something like AFLAC.  You need to look at the terms of the policy and if they’re not covering it, find out what the appeals process is under that policy.


      Have Dr. Warner, Dr. O’Dorisio, Dr. Kvols, Dr. Anthony or one of the other cast of thousands write evil letters.


      Or nice letters depending on how you feel about it.




      PPO Hospital is a network of approved institutions, but they use a radiologist who is not.


      I assume now many o9f the radiologists, you know, your x-ray is shipped to India where it’s read by a Pakistani who speaks Israeli through a translator who is Chinese.  Tell me why I do not have absolute authority there.  This person did not know that until they received the bill asking for 50% of the charge.  Are you responsible when they’re in India?


      You know, under a PPO, you pay less if you go to the doctors and all the suppliers that are in that network.  Sometimes if this person is not part of your PPO network, it’s really hard to find out.  We know that with people who are anesthesiologists; a lot of them are not part of any network.  You don’t know that.  The surgeon may not be part of your network; you don’t know that.

      I suggest you go back to the plan and tell them you did not know this.  You assumed that all would be covered – you went to a doctor and a hospital that was PPO, that they were going to be using those providers.  This was something out of your control; go through the appeal process.

      I’ve had an agent that we worked with who has done this and won.  But this is once again persistence and part of the process.  If the plan still says no, go to your department of insurance and see what other options you may have.



      I work in Texas but my home office is in Wisconsin.  Whose law applies?


      That’s a good question.  It’s usually going to be set in the policy.  We find in California – I would say they are doing business in California, this company is doing business in California that the California laws should apply, which are pretty protective of patients.  It doesn’t always happen that way.  But once again, you’ve got to go back to your policy.  There’s probably something in there that says what state law applies.

      I hate to keep putting you off, but when you get into state law, it can be really hard to give specific answers.  I really apologize.


      Can you be eligible for Medicare and Medicaid at the same time?  Can you go on Medicaid and then after five months go on Medicare?


      Yes.  You can be eligible for both of them.  That’s that Medi-Medi situation I talked about where somebody can get both because the benefits they would get under Social Security Disability Insurance are less than what they Supplemental Security Amounts would be.  They can get it.  They would get Medicaid right away, depending on your state.  Most states are going to give Medicaid right away, but you’re not going to get Medicare.  It’s not for five months, it’s going to be 24 months after you are determined to be disabled.





      Very common in the nursing home industry that when you go into the nursing home that you get covered immediately by Medicaid and then once you go through the process of registering and all that stuff, you get Medicare.


      What protection is available under state law if a prescription drug coverage is dropped or limited by your employer for people who are already employees or retirees?


      Employers are not required to provide health insurance.  So if they are providing, they can provide whatever plan they choose to provide.

      The only time I can think where there may be restrictions on that if it’s a union, if it’s a bargaining agreement in place that they may limit the types of coverage they can drop.


      What are my rights or how do I do this: can I obtain copies of my medical records?  One of my doctors tells me to go get lost or it’s going to take a few weeks to copy them or he’s going to charge me $29.62 a sheet.  Do I have to pay to obtain copies of these records and does he have to give them to me?


      Most state are going to have some law that lets you obtain copies of your medical records.  There will generally be something in there that will say “timely” or reasonable time or something so that you can get it within this millennium.  There may be a fee for it.


      There is a fee for it.  Everywhere I’ve ever been.  Some doctor’s offices will give it to you for free but most doc’s offices or the hospital will charge you 15 cents a page.


      And it’s going to be, once again, a state law that sets the compensating charge.  I think California’s a little more than 15 cents a page.


      And trust me, that’s not unreasonable.  You’re asking me to pay for a secretary to take her time, pull your records, take them apart, copy it, put it back together and mail it to you.  Who knows what the post office is going to charge, and do it all under HIPAA rules, etc.  Fifteen cents a page is the cheapest thing you’re ever given.


      Do I have to pay to obtain copies of these records?  Do they have to give them to you?


      Yes, absolutely.


      Most every state has a law that has a mechanism for that.


      Your records do not belong to you – your x-rays do.  Your records do not.  They have to give you a copy of your records and your x-rays, but they will charge you for them.

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      What you get is dependent on state law for the details or specifics of what you’re going to get.


      If your employers gives health insurance, do they have to get you’re a benefit plan book?


      You’re supposed to be entitled to one, at least in every state I’ve looked at.


      If your employer places you on disability retirement, then Social Security says you’re employable, does your employer place you back in a similar position in the company?


      I don’t know.  On disability retirement, up through – if this is through a private disability policy, they may have a different definition of disability than Social Security does.  So sometimes you can get different answers there.  On Social Security 5 Step Sequential Analysis, these can be tied together very well, and I don’t know the answer to that.  Sorry.