Insurance Coverage and Financial Issues

When people in the United States get sick, Maria H. told us, “insurance is what is in charge.” Insurance coverage often determines which types of screening and treatment are received, from which providers, and when.  Since 2010, federal law requires coverage for certain conditions and screening exams, but enforcement of insurance regulations varies from state to state.  People with genetic syndromes and hereditary cancer have special health care needs, so insurance looms large in their experience. The people we spoke to who have good insurance recognize that they are “lucky,” but that there are others who do not have such luck. Heather calls insurance “the biggest deterrent and problem…people are literally losing their lives…due to this inability to have things properly screened for in advance, and then how they’re treated once something is there.”

 

Jack points out the special impact of an inequitable system on people with genetic syndromes.

Jack points out the special impact of an inequitable system on people with genetic syndromes.

Age at interview: 65
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Lynch syndrome
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It also raises a clear awareness of the inequities associated with medical care in this country. When I look and see the absurdly expensive charges that get laid not so much to me because most of it gets covered. But to anyone-- I mean, we're talking $6,000 and possibly more. And a clear awareness of how inequitable the system is, and the changes that are needed to, I think with someone who does not have adequate health care, which is a very large number of people who aren't covered by insurance. And the importance of having health care, so it certainly generates an awareness not only of one's own personal risks and how it gets done but for anybody who's paying attention to the importance of everyone having access to the kind of health care that happily I have access to. And I think that is as important as anything else and actually is something that everybody in [INSTITUTE] might want to raise as they talk to people of varying incomes and backgrounds, of h ow it is you're going to deal with this in the future? I'm appalled at the cost. And it does you know, reinforce a commitment to making political decisions that allow more people, everybody who might have this syndrome. I mean, the cost of it is clearly inequitable. And I don't know why. But it has political ramifications in the sense that I'm aware now. I'm much more aware now of how much things cost because my insurance through the [INSTITUTE] and that is very good indeed. And to find that I only need to pay you know $300, $324, which I can afford. But there are many people who cannot afford $324, of the nearly $6,000 that it takes to be consistently treated prophylactically. Not even for the-- but prophylactically. And I don't know what it would mean for me, as a social scientist, very interesting to-- and I wonder from your study, how many, not only the income levels of people who are being, and what does it mean? A concern that I do not have is, how much is it going to cost me? Even if it was only $324, for many people that would be a substantial impediment to their own health care and to treating them the way they-- much less going in. How can a colonoscopy cost $6,000?

An Interesting System

The people we spoke to get their health insurance in a lot of different ways. Some, as Sarah described it, have a “very good job that has great, great benefits.” Briana chose her employer, in part, based on the insurance coverage they offered.  Several people use other types of employment-linked coverage, like COBRA or supplemental policies. Others rely on individual policies through the ACA exchanges, which in their experience may be more limited in their coverage, or on Medicaid or Medicare, government insurance programs that require them to meet strict eligibility requirements. Because many people we spoke to have lived with their conditions for a long time, it was common for people to have experience with a number of different types of insurance.  Some, like Eve, also mention how other relatives with hereditary cancers “would have died” without insurance that covered life-saving screening and treatment.

 

Linda describes having long ago purchased a supplemental insurance policy that helped a lot with cancer-related costs, because she had seen her grandmother die of cancer.

Linda describes having long ago purchased a supplemental insurance policy that helped a lot with cancer-related costs, because she had seen her grandmother die of cancer.

Age at interview: 63
Cancer-Related Experience: Cancer
Type on Inherited Risk: Family history of cancer
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Well I purchased a cancer, supplemental cancer policy in 1990 and my husband and I paid $27 a month for it. And every time, every year, I'd say, “[NAME], do you want me to continue it?” He goes, “It's not much money. Why don't you just go ahead and do it?” You want to retire, so we got our long-term care there, too, for both of us. So I retired and I said, “Do you want me to continue it?” And he goes, “Might as well.” And I had forgotten I had it. And so after my diagnosis and everything, my husband spent a morning researching and looking through the policy. And so I had this supplemental policy that reimbursed a lot, and to the tune of, the first year, almost $100,000. So mine, it didn't coordinate with my insurance, which I thought that's what it would do.
Yeah.
What I purchased. And so it reimbursed everything. And right now, it's paying for all of my aromatase inhibitors, reimbursing me for the amount that my insurance company pays. And so I only purchased it because of my grandmother.
That was your grandmother's gift to you, wasn't it?
Yes. I was there the night my grandmother died. I went with my mother. And I've looked back on that many, many times and remember it vividly. And she, I was first granddaughter, only granddaughter, I should say. So she and I were very close and so I've thought about her a lot and what her feelings might have been. I don't think she got the great care. They didn’t have the great care then that they do now.

 

Eve has had several different kinds of insurance and also has been uninsured.

Eve has had several different kinds of insurance and also has been uninsured.

Age at interview: 40
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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In 2002, I was done with college, you know, again with the-- you know, I had the breast tissue-- no, this was even before the breast tissue, my dad wanted me to get on health insurance, even like a catastrophic plan. And I went to go see his insurance agent. And he said, “you had thyroid cancer, no way.” And I kind of figured at that time, well, I just have to be really careful. About six weeks after that, the breast tissue made itself known. So, I investigated. I investigated nonprofit things that I could do, because I was making oh, god, what was I making-- like $10 an hour. Maybe it was $8 an hour. It was, you know, crazy low, so I couldn't pay full price. Or, you know, I couldn't pay cash to get this stuff looked at. And I was too young and became too much to get that. And my dad, I don't know how my dad found out about the high-risk insurance, but he- you know, we got set up with that. And then I could go to [LOCATION] to be treated, and, have insurance to have the bilateral biopsy done. Let me think. Then I was without insurance from 2005 to 2007. But things were pretty quiet then. The only thing I really maintained was, blood test for my thyroid levels, but that was enough. You know, that was still pricey enough to pay for out of pocket. 2007 to 2016, I was insured. And then in 2016, my husband lost his job. But luckily, you know, we had the Affordable Care Act to go onto.

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The plan I had from 2016 to this year, or to late 2018, once the genetic issue made itself known, I found a breast surgeon at another major research institution who specialized in breast disorders. And I called to make an appointment. And they were, like, “you know we don't take your insurance.” And I cried. And, you know, then I called around to other big institutions and they didn't take my insurance. So that's why I go to this health care system near where I live. And I was very open about what was happening. I haven't been as fast-- like, when I was on the Affordable Care Act plan, I wasn't as fast to get stuff looked at.
Because?
Because, you know, I was in denial. And I was nervous about would this plan pay for it? Would the specialists that they would want me to see take the insurance? Things of that nature. But I mean, I love the Affordable Care Act and I hope it never goes away.

Limited Access

As described elsewhere on this website, people with genetic syndromes and/or hereditary cancers have special needs for genetic testingpreventive and diagnostic screening, and treatment with surgery or medication. Either because these special needs are not understood, or in order to avoid paying for care, insurance companies may limit or make it difficult to access any of these. Of course, for people without any insurance coverage, these problems are magnified.

Some people, like Cynthia and Chelsea, reported that all their genetic testing was covered.  Others described experiencing only limited coverage. Paul has good insurance now, and is getting treatment for his polyposis syndrome, but early-on his lack of coverage meant he did not get the genetic testing his doctors recommended. As he puts it, “if you’re under-insured or if you don’t have insurance, then you sort of—you adjust your way of thinking…And you’re like, well, I’m not sick, and I don’t feel bad.” Desiree’s insurance covered some testing, but not all the tests needed to make a definitive diagnosis of her condition. Lainey remembers being denied for genetic testing in the past, “before the third cancer. But then this time, it was approved.”

 

Barry’s troubles with insurance coverage lead to confusion about his testing.

Barry’s troubles with insurance coverage lead to confusion about his testing.

Age at interview: 63
Cancer-Related Experience: Cancer
Type of Inherited Risk: Family history of cancer
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It was to find out-- my doctor said to find out about my different cells, making sure, you know, I guess it was hereditary or something, making sure that none of the family members-- I don't know how they could tell. But, you know, but I guess it's almost like doing experimentation.
Right.
Yeah.
But you haven't gotten the results from that yet?
But it wasn't-- because I didn’t finish the test. [INAUDIBLE] three times. but only did I-- not even once in the machine. And the insurance company wasn't going to pay for it no more after that. You know, they said we're not going to pay for experimental. And they wasn't too happy, my insurance company, you know, because they feel these doctors are just doing experimentation.
Hm, and that they don't need this information?
Yeah, yeah, uh-uh.
And this test was--
But they approved but then they-- when they found out I guess that after it didn't really affect me or anything, they said no, we’re not-- you can't do it unless you got to pay for it on your own. You know. And that's, who has-- who knows how much it would cost.
What do you mean when they found out it wouldn't affect you?
They found out that it was experimentation. Like, you know--
Uh-huh, yeah.
So I-- because I told them before, before I do it, I said “well, if the insurance company approve it, then I’ll take the test. I'll do it. But if they don't approve it, then I can't do it.”
Right.
So they approved it. But then after about a week after this, I get another note from the insurance people saying, “we're not going to do this anymore. We're not approving anymore.”
Hm.
It was kind of confusing to me, you know. But maybe it just wasn't meant to be.

Sue notes, “my feeling is that the general insurance industry has a really strong focus on waiting until something’s wrong and then having to treat it. And they aren’t as willing to pay for screenings.” Indeed, we heard from many people that the process of getting insurance to pay for preventive screening can be very difficult. Terry and Heather both, for example, describe spending many hours learning about insurance codes and fighting with their insurance companies to pay for their frequent screening colonoscopies. Janice had to argue with her insurer in order to get coverage for BRCA testing before she had surgery. 

 

Thomas discusses how his access to care has waxed and waned as he has gained and lost insurance.

Thomas discusses how his access to care has waxed and waned as he has gained and lost insurance.

Age at interview: 47
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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“Everything about you is rare.” He said, “We sent your specimen in for testing.” And he said, “You have the rare form of colon cancer.” He was upset because he couldn't treat me at the time because I didn't have any insurance. And to rewind back, I was sitting in my house at 40 years old, and I was looking, I was sitting there thinking, I've got to find a way to get some insurance. And that colon commercial came on. It literally came on, and I'm sitting here and I'm looking at this colon commercial, and I'm sitting here and I'm like, “OK, God, I said, I'm going to get, I’m going to go get checked out. As soon as I get some medical insurance, I'm going to get checked out. And that's when all, when I turned 41, all of this happened. So they sent me to another hospital. But he made sure that I had a team that he trained that was at this sister hospital that was with them. So went there and I talked to them. And, oh, they set me up to go to a place called [LOCATION] for genetics testing.
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Were you afraid to get checked out when you, when you knew? Because it sounds like your, you had the cancer in your family.
You know what it was? It was like not scared, it's not having the insurance.
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Before I came here, I did one, yeah, in 2017 before I got kicked out. They pulled out six. But the one that they pulled out six, I didn't see doctors for a whole year. Because she switched my medical insurance from JPS medical insurance to Humana, and JPS don't deal with Humana insurance. So I lost the whole cancer team for a year. So when I did get another set of team, they pulled out six polyps within a year.

 

Briana says her insurance may cover only some of the screening her doctors recommend.

Briana says her insurance may cover only some of the screening her doctors recommend.

Age at interview: 28
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Identified breast cancer mutation
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I just switched insurances, so I'm going to have to find a new oncologist. I didn't think about that, but it's coming up on a year. And I want checkups once a year.
Yeah.
Because it’s great to have somebody else—you know, even though I’ve had a mastectomy, there’s still a risk that I get breast cancer.
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Right now, because I’m hired as a temporary employee, so I have health insurance through the ACA, through Obamacare. And what I have now is a preventative health plan. So that covers, you know, your yearly physical, and PAP smear for women. But that doesn't, that wouldn't include any of the like pelvic ultrasound, or the CA 125, or the-- I don't know if it would cover the dermatologist or not. So that's kind of terrifying for me right now. I really don't like that.

 

Paul says his insurance company didn’t want to cover his prophylactic surgery.

Paul says his insurance company didn’t want to cover his prophylactic surgery.

Age at interview: 46
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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And if they-- every once in a while, they'll balk at covering something. But I think it boils down to a communication issue. Because my situation is a bit unique, in that I've had to have some procedures done that could be considered not medically necessary, even though they were. But again, there's having something done prophylactically that can be a problem for an insurance company. “Why are you having your stomach removed? You’re not having, you know, you don't have cancer.”
Right.
It’s like, “but I could.”

Limited Choice

Most insurance has rules about which doctors, clinics, hospitals, or centers are “in-network” and thus can be fully or almost fully covered - versus “out-of-network” and eligible for limited or no coverage. For example, for Denise, who lives in a small town, “insurance dictates” that she receives care an hour away from home. People with genetic syndromes or hereditary cancer find these rules particularly burdensome because they rely for their care on providers who know them and have expertise in their specific conditions.

 

Gina is about to lose a doctor she relies on because her insurance has changed.

Gina is about to lose a doctor she relies on because her insurance has changed.

Age at interview: 45
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Family history of cancer
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I recently retired because of some different health issues, unrelated. And now I haven't had any specific incidences, but I'm going to have to leave Dr. [NAME], which breaks my heart. And I'm nervous. I'm nervous that our new insurance won't follow the protocol that she's been doing for oh six, seven years, probably. But I don't know that. I just-- I have an appointment in a few months with my new breast doctor. And it's not at a high-risk clinic. So that does worry me.
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Dr. [NAME] told me that everything will be followed. And she would give a recommendation of the same treatment, protocol, to follow. Obviously, I'm not going to be able to go to the current clinic that I'm at. So, yeah. There's just that nervous edge on me because I was feeling so comfortable with my doctor, and what we were doing, and knowing I was being watched closely and-.
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Well, even while I was teaching, you know, there were-- because the schools always try to go with the lowest price. And then-- so there were always changes. I always decided to keep paying whatever I needed to, because they would give us choices once we were on the state plan, so I could go to my same doctors. Well, now that my husband farms, and I'm not teaching, we had to think about finances and what our lowest premium and lowest deductible was going to be. And unfortunately, to keep all of our other doctors that we wanted, that were still in that plan, I had to lose my breast doctor.

 

Irina switches insurance so she can receive care at a specialized center.

Irina switches insurance so she can receive care at a specialized center.

Age at interview: 45
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Identified breast cancer mutation
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So, my husband is a state employee, so we were kind of, with that insurance before, covered by campus insurance, and just decided to move to another one. I can't even remember why we did that originally, just something with the convenience factor. And then once I got tested, I was not having surgery there. I knew that I wanted to be connected to the campus, and all the research, and all those doctors. Yeah, so I did some research, but mostly just I knew people there, and I knew the cancer center so.
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I didn't have any issues. But I have to say, I did switch it because I wanted to go to that insurance where I am now, because I knew that was a research institution with way more experience and way more resources. And, well, the one that I had before, they don't have a cancer center. They don't have all those people who work on that particular topic with research and clinical staff. And all, so that was the main reason I did. I didn't have an issue with them. They were very good doctors. But I just felt like the network on campus is a little better suited for my desires.

Fear of Becoming Uninsurable

The problems related to being uninsured are well-known by the people we interviewed and weighed heavily in their minds. Steve Z. said he “couldn’t imagine not having insurance,” but a lot of people we interviewed do imagine it and it scared them. Although federal law in the United States currently prohibits discrimination based on preexisting conditions, many people we interviewed expressed a fear of losing health insurance and then being unable to get new coverage because of their genetic syndromes or histories of hereditary cancer. Matthew described “always be[ing] focused on maintaining insurance, and coverage, and not having those lapses in coverage, because then it’s much easier.”

Other Financial Issues

Genetic syndromes and hereditary cancers are chronic conditions that also often involve periods of acute illness.  As a result, they introduce what Desiree called “financial toxicities” into people’s lives. Even with insurance, there are deductibles and co-pays that add up, often to thousands of dollars each year. As Briana noted, there are additional costs of being sick, such as travel to medical facilities that are not covered by health insurance. Because she faced all of these expenses, Peggy talked about being unable to save as she once did. Because “money can be a little tight” she had to “[curb] some of the stuff that I’ve been doing, you know, going out with friends, traveling.”

 

Carrie describes a “perfect storm” of financial woes.

Carrie describes a “perfect storm” of financial woes.

Age at interview: 54
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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Yeah. So what was your insurance like, and has—how has it been over the—the course of all these episodes?
Mhm. Well, when I worked retail it was a little less comprehensive. So we basically were responsible for 20% because we were considered out-of-network. That was a lot. And also there was a recession, and there was just a lot going on. And, you know, I was hourly, so then when I did take off for FMLA, my job was safe, but I had no income.
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We did work with the hospital on their community care program and got some grants and some of those things were given. But in the end, we had to file bankruptcy or we were going to lose our house. We had to coach our kids not to pick up the phone when the debt collectors were calling. It was an eye-opening and humbling experience to go from a solidly middle-class family, and then just through the illness and the recession. And, it was kind of a perfect storm of things to go to where you're saying, “don't pick up the phone, kids.” And looking at your balance sheet and going “the only way we can save our house is to file for bankruptcy.” That's really hard. That's really hard to do when you've been brought up, you know, that you take care of yourself and you pay your bills and that's the right thing to do. So, that was a really difficult part of the ride.

Many people we interviewed spoke of the stress of needing to keep working while very ill, both to maintain health insurance and also to have money to live on. Victoria had to stop working, which was a source of great worry. She explained, “if I leave work, how are we going to cover everything? Things for the house, the bills, everything that we will need?” She added that because her husband takes time off from his job to care for her, the family’s income is further reduced.

 

Victoria discusses her worry about having to stop working.

Victoria discusses her worry about having to stop working.

Age at interview: 43
Cancer-Related Experience: Breast Cancer
Type of Inherited Risk: BRCA1 Gene
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When I stopped working, I also had in my mind and I said, well if I leave work, how are we going to cover everything, things for the house, the bills, everything that we will need? My husband also stopped working some days to be there with me. Also he worked fewer hours because he was with me more. So, well, then came everything, everything on my mind. You are with him – you are going into a treatment or that it will take a lot of time, you are not going to work. My husband also will be there for my care. So, well, yes, he came on my mind a lot and I said, well, where are we going to get so much money to cover everything? But - and what came to my mind was– then what I said, well, right now they are going to do a surgery on me, I know that it will be a lot…or where…- so when I came to the clinic, the doctors told me, no, they say, focus on your health. And everything about payment and all that, we will help you to apply. And that was where we started to apply and they helped me. I was also with [name]. They also helped me. I don’t remember if it was two months of rent. They paid my rent for two months. So that also felt like a big relief. Later. But, well, it took me a year and a half to go back to work. A year and a half. Um. And even when I already felt a bit more like going to work. And so, then I started. But yes, I took like a year and three months, thereabouts, without working. 

 

Cuando yo dejé de trabajar, también vino en mi mente y dije, bueno, si yo dejo de trabajar, ¿cómo vamos a cubrir todo, las cosas de la casa, los pagos de "billes--" todo, todo lo que hace falta? Mi esposo también dejó de trabajar unos días para estar ahí conmigo. [eh] También dejó de trabajar menos horas porque, pues, ya él estuvo más conmigo. Entonces, pues, viene todo, todo, todo en la cabeza. Estás con el-- vas a entrar a un tratamiento que va a tardar mucho tiempo, no vas a trabajar. Mi esposo también va a estar ahí al cuidado mío. Entonces, pues, sí, vino mucho en mi mente y dije, bueno, ¿de dónde vamos a sacar tanto—este--dinero para poder cubrir todoPero, y lo que en mi mente vino fue—luego lo que dije, bueno, ahorita me van a hacer una cirugía, yo sé que va a ser mucho…o dónde…entonces cuando yo vine a la clínica, las doctoras me dijeron, no, dice, este, enfócate en tu salud y ya lo del pago y todo eso, nosotros vamos a ayudarte a aplicar. Y fue donde ahí empezamos a aplicar y me ayudaron. Estuve también con [NOMBRE] Ellos también me ayudaron, este. No me acuerdo si dos meses de renta. Ellos pagaron mi renta dos meses. Entonces eso sentí también mucho alivio. DespuésPero, pues yo tardé año y medio en regresar a trabajar. Año y medio. Este. Ya hasta cuando me sentí un poquito más ya con ganas de ir a trabajar. Y entonces ya empecé. Pero sí tarde como un año y tres meses, por ahí, sin trabajar.  

 

Precious leaves her job when chemotherapy makes it difficult for her to work.

Precious leaves her job when chemotherapy makes it difficult for her to work.

Age at interview: 65
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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So I started my journey with breast cancer over again. And at that time, they, you know, started chemotherapy. They gave me two years to live then. 30 years ago it was three years or two years or whatever. This time, it was two years. And I, at that time, was working full time with [Organization] and I, you know, had a lovely job as a nurse consultant. And I thought I was going to continue to work there at least until I was my full retirement age. But the Lord had another plan. And so, I started having problems in terms of-- because of the chemotherapy, I couldn't concentrate as well. I was constantly tired. Fatigue was a major issue. I had chronic diarrhea. I mean just side effects of the chemotherapy, basically. And so, I just had to go on disability. And that was a challenge. Because you know I live alone and I'm single. And I'm my, you know, my sole source of support. So, I was concerned about my finances. But in any case, you know, the Lord prevailed, and I was able to go on disability. The only thing about disability is that, in terms of Medicare, you aren't eligible for Medicare until you've been on disability for two years. And so, I was a little concerned about my insurance issues and whatnot. But two years went by, and I was able to apply for Medicare. And so you know, things came together. And so now, I'm enjoying retirement. And this will be my fifth year with living with breast cancer.

Dealing with Finances

The people we interviewed used different strategies to deal with their insurance and financial issues. The strategies available to them are dependent on their individual resources. Precious, for example, was able to turn to government services to provide income. She was also able to use a pharmaceutical company-run program that provided her with subsidized medication (see resources tab).  Others, like Maria H. and Victoria, accessed community funds through a hospital. Peggy’s friends held a benefit for her. Charlene and Lisa J. both told stories about their doctors writing letters to insurance companies that ultimately were successful in getting them the care they need.

People with greater means used their own funds. Christian was able to pay out of pocket to continue seeing what he believed were the “best doctors” for his condition. Matthew said, “I know I’m going to spend a few thousand dollars every year to get scopes done. It’s just, it’s part of the budget.”